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Needing thoughts on trip to Mayo Clinic
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Needing thoughts on trip to Mayo Clinic

Hi All!

I've been reading through the posts here and getting to know some of you on-line, where you've been extremely kind and helpful. Now I'm wondering what you make of me. I don't want to be too "wordy,"  like many of you, my story is oh so long and complicated. So I will try to stick to the highlights for  you...

1) "classic" symptoms of undiagnosed hypothyroid for many, many years.

2) after a summer illness, had minor sinus surgery in August and have been sick ever since.

3) beginning immediately after the surgery I had: extreme muscle fatigue, joint and muscular pain, weakness, nausea, headaches, lots of hair loss, and pain in my neck (those were the major symptoms)

4) I found a mass on my neck where it hurt, and a ultra-sound concluded I had a multi-nodular goiter on my thyroid.With my family history, I believe it was there all along, "something" just set it off.

5) only started t4 treatment-synthroid-when my tsh went over 5 sometime in Sept. my goiter did not like this, continued to grow and cause pain in my neck.

6) next, a fine needle biopsy was inconclusive for any type of cancer, plans were made to have a partial thyroidectomy late in October if I was well enough, as above symptoms persisited. i.e. I was bedridden and needed a wheelchair to go anywhere. I have not worked since August.

7) all along, messed around with endo's who were not willing to work with someone they continually labeled an "atypical" patient.

FYI: my first endo "dropped" me when I went for  a second opinion, when I was apprehensive about waiting nearly 2 months for a follow-up with her ... (more fyi, here: I collapsed in her office and she told my husband we had to go BACK to my gp for any type of referral for a specialist, because what was going on with me was not my thyroid. She refused to treat me, my husband had to wheel me out of her office and take me to the ER. I guess it was ok she DROPPED me, huh.

8) "graduated" to a cane and had surgery late October, was very scared symptoms would get worse with this surgery, by the grace of God they did not get worse, they remained more or less are the same

9) In December, found a very, very good internist who championed me, listened to my symptoms, looked at my previous labs, retested me and increased my synthroid and added cytomel as my ft3 was always in the bottom range. At my 1 month recheck last week, for the first time since this all began, all three levels were in the "normal" range. Good! Yea!

10) Sadly, he still feels that I have enough neurological symptoms that had not been addressed properly and continue despite all that has been done for me, so he referred me to the Mayo Clinic. Specifically, he thinks I have MS, so I will start in neurology.

Now, you are caught up!  BTW no Hashimoto's-never had a positive antibody test result. Thought at one time to have Hashimoto's encephalitis, fortunately that was a no. I also did not have, EBV, Addison's, Lupus, Lyme Disease, ect...Through my reading and education on this forum and others, I checked the results of my ATCH  that they gave me in the hospital and I learned they gave it at the wrong time of day- 9:00pm!! But no doctor I saw after the test ever mentioned it, even with low numbers I presented with at that time of day. Also, my potassium and electrolytes are always in the bottom of the range.

So, I am wondering if I have an adrenal issue as well as a thyroid issue and if that could be causing many of my current symptoms? Those are, muscle weakness, pins and needles feelings on the left side of my body, tremors, scalp pain, headaches, extreme fatigue, and some other "minor" annoyances I've put up with for years. However, I did not have any neurological symptoms before the August surgery.

Do you think Mayo Clinic will be able to put all of these pieces together? Or should I ask my current physician to repeat the ATCH test at the proper time of the day before I go there? Have any of you been to Mayo, or know someone who has been there who has successfully been able to figure out an endocrine illness? I have two more weeks to wait for my appt. there, and I guess I have lost some confidence in the medical community, even though I know Mayo has a stellar reputation.

Thanks for listening and if you all don't mind, I'll keep reading these boards, and learning from you, and chiming in from time to time because it helps me a lot. Thanks again!
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Avatar_m_tn
Have you had your Vit B-12 and Vit D3 tested?

I think low B-12 can cause tingling in the extremities.  Also both being low are associated with fatigue etc and is common for people with low Thyroid to also be deficient in these as well.

you can have a cortisol test done.  You want either the 24 hour saliva or I think I recently heard of a 24 hour urine test. The full day long test are FAR more accurate than the single blood test as cortisol (An adrenal) varies in output throughout the day.

Do you have your last results of blood work. You mention that are within the normal range.  If you have read much on this site you should have already learned that simply being with in range is NOT sufficient.

Many people need their FT4 in the MIDDLE of the range and their FT3 in the UPPER 1/3 of the range before symptoms are relieved.  Simple being somewhere within range is not good enough.  Close only counts in horse shoes and hand grenades.

I would tend to want to try to get as many tests done BEFORE you go to Mayo so that when you meet with the Dr they will have all the facts at least available and not guessing or testing and send you home before the results come in.

When the Thyroid levels are so low for so long, the adrenals try to take over and they get worn out.  More commonly called adrenal fatigue.  Since you state that you believe that you have been untreated and/or under treated for years this is at least a possibility in your case.
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192918_tn?1199454779
Have you ever had an MRI done to rule out/diagnose MS?  That's what I'm going in for today to begin my testing for my symptoms.

I hope your test goes well.  Sorry I don't have any advice, as I'm just beginning this fun journey myself.  Please keep us posted!
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Avatar_m_tn
Have you had your Vit B-12 and Vit D3 tested?

I think low B-12 can cause tingling in the extremities.  Also both being low are associated with fatigue etc and is common for people with low Thyroid to also be deficient in these as well.

you can have a cortisol test done.  You want either the 24 hour saliva or I think I recently heard of a 24 hour urine test. The full day long test are FAR more accurate than the single blood test as cortisol (An adrenal) varies in output throughout the day.

Do you have your last results of blood work. You mention that are within the normal range.  If you have read much on this site you should have already learned that simply being with in range is NOT sufficient.

Many people need their FT4 in the MIDDLE of the range and their FT3 in the UPPER 1/3 of the range before symptoms are relieved.  Simple being somewhere within range is not good enough.  Close only counts in horse shoes and hand grenades.

I would tend to want to try to get as many tests done BEFORE you go to Mayo so that when you meet with the Dr they will have all the facts at least available and not guessing or testing and send you home before the results come in.

When the Thyroid levels are so low for so long, the adrenals try to take over and they get worn out.  More commonly called adrenal fatigue.  Since you state that you believe that you have been untreated and/or under treated for years this is at least a possibility in your case.
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1857376_tn?1328886464
Thanks Filbert143 for replying to my post! I was afraid after days of no replies that I had scared people off! Yes I had an mri in Sept. and several others too; thoracic and lumber, for example. They told me that my brain mri was ok. The doctor who referred me to Mayo thinks I need to be seen by neurologists with more expertise than the ones where I live--and I agree!!  


FlyingFool, thanks to for sharing some thoughts with me. I only shared a "brief" summary of what I have been going through. So, I appreciate you taking the time to dig and ask some questions. It's  hard to know "exactly" what's helpful to share about my condition without being overwhelming. I think I have shared my labs before. I have a tracker too. It's fun!!

I had my B vitamin 12 tested in Sept. It was high, 1188 (range: 211-946). No one ever mentioned anything about it. I had folate tested too and it was  high. I didn't find any other vitamin testing, only calcium.

My most recent thyroid panel from January 23:

tsh    1.71 (0.04-5.50) outdated range, I know!
FT3    317 (230-420)
FT4    1.1  (0.8-1.8)

tsh-wise, this is the best number I've had since August when I first got sick. So I was encouraged by that number, as well as the other frees.

Now, to compare, previously on Dec. 28th I had these same labs done and the results were: (same ranges as above):

tsh    2.91
FT3    242
FT4    1.0

After those December labs, he upped my synthroid from 50 mg daily, to 75 mg daily. He also added 10 mg cytomel. I was happy with that additional med because I knew my FT3 had been running low since they began testing it. But I could only take 10 for a few days before I had to back down to 5 mg. It was affecting my heart.

I had the cortisol test you mentioned, the ATCH. They gave me this test in the hospital at 9:00 pm. I've read that this test should be given in the morning, and I've asked two other doctors if this test should be repeated at the correct time of day and they don't seem to think it would make a difference.  Frustrating, I know.

I hope that the adrenal aspect will be brought up at Mayo. I just don't know if Mayo doctors think that way and would be on board with other types of adrenal testing. Whenever I read about adrenal issues being resolved it seems to come from more holistic doctors.

Yes! I have a binder FULL of my medical history,tests, labs, radiology, and notes from specialists .....so I have lots to supply them with.

Thanks for asking for more info and taking the time to share with me. It's encouraging. I've worked very hard to get better throughout my illness. Some days I think things are turning around, and other days it feels like I'll never get better.

Gotta have faith!!
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Avatar_m_tn
Maybe go back to basics.

What symptoms are you having currently?

Your FT4 is not up to mid range yet so there would be some room for an increased dose of synthyroid above your current 75 mcg.  That may help raise your FT3 levels a bit since you were sensitive to the Cytomel.
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1857376_tn?1328886464
Sorry, I'm not sure what you mean by back to basics.

These are my current symptoms from my first post:

10) Sadly, he still feels that I have enough neurological symptoms that had not been addressed properly and continue despite all that has been done for me, so he referred me to the Mayo Clinic. Specifically, he thinks I have MS, so I will start in neurology.

I really wanted to know if there was anyone who had success at Mayo. I posted this question in another forum too. Unfortunately, it's not just a thyroid condition.

I'll be interested though, in what the Mayo doctors think of my thyroid meds.

Thanks!
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798555_tn?1292791151
Some of your symptoms - "extreme muscle fatigue, joint and muscular pain, weakness, nausea, headaches, lots of hair loss, and pain in my neck (those were the major symptoms)"

Just a note : I had all of those symptoms for 10 years on synthroid and generic levothyroxine. After the dose was raised, the symptoms still remained. Also had tingling in feet and hands, severe GERD. Was thyroid related. I still have some muscle pain that I have learned to control, but everything else is way better. High quality ($) Magnesium played a big part in controlling my symptoms too. Do you take magnesium? It not , try it, any type but mag oxide should be noticeable to some degree.

A specific brand of Natural thyroid for some reason was my answer. It took years to figure this out. Regardless of people saying synthetic thyroid meds are the same, I say nonsense. Because it is not the same. It is quite possible some peoples cells are pickier than others to accept hormone that is not ours into the receptors. And of course some people cant tolerate natural thyroid meds either. What your body (your cells) are willing to accept, is what works.
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1857376_tn?1328886464
Yes, I agree they are symptoms of a thyroid condition and with each endocrinologist and specialist I saw I asked over and over about a correlation between the neurological symptoms and the "overt" thyroid symptoms.

I think their rational  has always been that because I had the thyroid symptoms before I had the first surgery (#2 above) and then all of the neurological symptoms afterwards, they aren't connected. My neuropathy is on the entire lefts side of my body, including my face and neck, but bi-laterally in both legs and lumbar region.

When I first noticed my goiter, it was also on the left side of my neck, I could touch it, and it would make the left side of my face, my neck and my left arm feel like "pins and needles" with sharp shooting pains throughout. It took me a LONG time to even get them to acknowledge that I was "sane" about this fact.

My current doctor who is working with BOTH these symptoms and my thyroid condition (better treatment than both endos!), is willing to try natural thyroid hormones, but not until I get to Mayo and receive further testing.

I had the ATCH test while in the hospital (between #4 and 5 above), when I kept having synscope episodes that left my left side debilitated for a good hour after each time---and they gave it to me at the wrong time of day---nine p.m.!!

It's infuriating how much time is wasted. I can't imagine how you've gone 10 years. I'm disabled, unable to work and participate in my family's lives and I am just tired, and tired of it!! Thanks for your ideas. I hope Mayo will test some of the vitamins and mineral levels you are all suggesting.

It can't be this hard!!
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798555_tn?1292791151
Yes, I would like those ten years back. At some point when we've had enough, most of us get educated and take a stand for rthe better. A good part the profesional medical community has become very pathetic.

The accurate Mag test is called Red Blood Cell Magnessium test. It has a wide range, if your on the low end, supplimentaion will still benefit your health.
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1857376_tn?1328886464
Your saying that maked me think of a comment my gp made months ago. She said my red blood cells were larger than normal. As always, she just shrugged her shoulders instead of looking further into it. That's why I had to move on to the current doctor I have. I will look up that test you suggested.

I know what you mean about the education. I've spent so much time learning about and managing my health, I joke it's become my full time job!

I have several environmental allergies, and since I've become ill my athsma has come back enough that I had to start singular to control it. I have problems with fumes, perfumes, detergents and other chemical smells. I can't use regular toothpaste or mascara. I am allergic to several kinds of medicine too. So it's possible the synthroid doesn't agree with me.

Have you ever looked at  the side effects of synthroid, or the generic? They are the same as the symptoms you are taking the meds for!! WTH is that all about?

Some people mention issues with "batches" and quality control and also having periods of time where it's not available. Have you experienced any of this while taking your natural hormone?

I'll write down that test to take with me! Thanks!
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649848_tn?1357751184
If you have larger than normal red blood cells, you likely have an issue with vitamin B12......

Side effects of synthroid or generic levo are most often those of being over medicated........ if you have other symptoms, you might want to look at reactions to binder/fillers in the meds.......

Don't expect the doctors at Mayo to pick all the issues out of your notebook... if there are things that you think are outstanding, you will need to bring them up and push for further evaluation. You need to regroup and write down all the issues you think there might be, so you can make sure the doctors look at them all.... or you're going to be disappointed.

ACTH is not the same as a 24 hr cortisol test, whether it be saliva or urine.  Was that an ACTH blood test or a stimulation test?  I had an ACTH test, came back normal, but was never given the stimulation test.... check out this site: http://www.nlm.nih.gov/medlineplus/ency/article/003696.htm

You have a lot of homework to do before your trip to Mayo.
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798555_tn?1292791151
I truly believe people should only switch to natural thyroid hormone (yes, its from pigs) after they've given synthetic a good try, since synthetic are more readily available.

For the record, I think the brand Synthroid was hard to get for a while in the late 90's. So you never know what can happen.

The low volume of all natural thyroid brands and the lack of doctors / knowledge that will prescribe them is the down side.

The natural brands all have different fillers that seem to make the performance difference between all of them - this differs among the people using them too. I feel no difference on the Canadian brand I've used for almost two years as far as "issues with batches". The fact that I have to order it from Canada is the worst part, well no, the people that want to change import med laws in the US are the scariest part.

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1857376_tn?1328886464
Really, I need to do my homework?.......Not appreciated. You don't know me. I guess this is NOT the right forum for me. I was interested in support, not judgments.

Yes, I know where natural thyroid hormone comes from too. GEESH.
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Avatar_m_tn
Calm down.  Barb gave you at least two pieces of advice and you seemed to ignore both of them.

I got the impression that Barb was encouraging you to do homework, not passing judgement as if you're not doing homework.  If there is someone that is passing judgement it doesn't appear to be Barb.

This is the best and most friendly forum I've come across with the best information and advice related to Thyroid that I've found.

You seem to have a lot of allergies.  So it is not out of the realm of possibilities that you are in fact having some reaction to the Synthyroid.

You might want to try Triosint. This doesn't have the dyes or fillers of the powdered pills.  Some people with allergic type reactions to other generic T4 medications have reported pretty good luck with Triosint.  Others have had to try natural dissected thyroid.

As I stated before your FT4 and FT3 are not horrible but could use some increase. So switching to Triosint even at the same 75 mcg may give you a boost since the liquid gel cap of Triosint seems to be absorbed better so more T4 gets into the bloodstream compared to the hard powdered pills.
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Avatar_f_tn
I agree with Barb135; Pick out the issues you want discussed that are more of an issue for you at the momement.

Unfortunately doctors don't have time to go over every issue we want them to, not in the limited time we spend with them.

What I do, and this is just me. I send over lab work & test & letter explaining my symptoms way before I go see them & leave it up to them on weather I would be waisting my time or theirs. I give them the option of canceling my appt. if they feel there is nothing they can do to help me. I did that with my ortho, gyno, endo, general surgeon & even my PCP if he feels I need to see him before making an appt.  All have called back being nice about my letter and they direct me in the right direction. Unfortunately for me, I have had to keep all appts. due to health issues. (sometimes I just call my PCP). I always extend the "answer at your convience". I will always explain that I work in an office enviroment so I know how hectic things get with phone with the letter or fax they can take their time.

I hate going to an appt. only to be told "all looks normal, can't find anything wrong".

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649848_tn?1357751184
Passing judgement?  That was the furthest thing from my mind.  

You said "I have a binder FULL of my medical history,tests, labs, radiology, and notes from specialists .....so I have lots to supply them with."

I was just saying that you might want to go through your binder and highlight the things that seem most important to you, because it's unlikely that the doctors or staff at Mayo will have the time/inclination to sift through all your information.
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798555_tn?1292791151
Drs think independently, the same ones wont necessarily agree at the same clinic sometimes. In that respect the Mayo is no different. I know Minnesotans that waited their turn at the Mayo and were disappointed. They assumed  they would meet Dr House and all would be fine, like on TV.. Of course hoping cant hurt.

Natural thyroid made from pigs! Really?....Wow, who would have thought. Back in the day, I figured it was from road kill........

Actually an MD argued with me that Armour was bovine......an MD, two years ago, for real. Guess his grandma had more Armour beef than bacon.

In the hay day of Armour , started in 1860's, they used just about every part of a processed animal they could - marking glue, brushes, oils, fertilizer, meat and pharmaceutical products.  Sounds like it was a nice place to work. I'm sure the aroma surrounding the plant was fabulous.
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Avatar_f_tn
Dear Dina,

Sounds like you are really going through the wringer. So sorry...it is very difficult to handle all the intricacies of a "non-standard" situation while having symptoms. (What is the standard situation, I always wonder ? "Take 50 mcg of Synthroid and leave me alone" ? )

A couple of things stand out to me. As flyingfool has mentioned, your FREE levels are still low and your TSH a little high, so I'm not surprised you are still feeling hypo. With the ranges you have submitted, your target zone should be about  1.3 for FREE T4, in the middle of the range, where you are just at 1.1. And it would not be terrible if FREE T4 was just slightly higher than the mid-range. Your FREE T3, on the other hand, seems quite low to me. I've only started feeling well since mine has reached the upper level of the range. 2/3 - 3/4 of the range is the target, and at the 3/4 mark, your level should be 373, whereas yours is only 317. With T3, this is quite a difference. And your TSH, at 1.71 is quite a bit higher than the 1.0 or less at which many of our members seem to feel the best. On T3, mine is currently so suppressed below the norm that I don't even measure it any more and this is not uncommon for those taking both T4 and T3.

Since you strongly experience the effects of the T3, perhaps you are not such a slow convertor, and your FREE T3 would rise with taking more T4 without your FREE T4 level rising that much. I read back, but couldn't find what dose of Cytomel you are taking, but wonder if you have tried splitting the dose and taking 1/2 in the morning and 1/2 in the afternoon ? I agree with the idea that, with all your allergies, Tirosint might be the way to go if you can afford it. The important thing, if you are taking a generic, is to have your doctor write on your prescription the preferred manufacturer of your generic and that it must always be filled from that specific manufacturer. (for instance, though I take brand Cytomel because the generic didn't work for me, I can take a generic T4 which always comes from Mylan.) People get into trouble with generics because if that isn't done, because different manufacturers use different bases which can affect the release of the hormone into your system. If you stick with one source and adjust your FREEs to that source you will become more stable.

Also, and especially before you go to MAYO....write the amount of hormones you are taking on every lab report so you will not have to go searching through your memory. When you are getting tested every 5-6 weeks and adjusting medication accordingly, it can get confusing.

You mention that a doctor told you that your red blood cells are larger than standard. I also have this, and it is a symptom of pernicious anemia....an autoimmune disorder that is frequently associated with hypothyroidism and can be accompanied by unusual bruising. Usually the treatment for this is B12 and many people have to go to the doctor and get a B12 shot on a regular basis. My blood doctor suggested I try sublingual B12 sourced from methylcobalamine and recommended the NOW brand, which I've found at Whole Foods. She also recommended Jarrow brand, which is a capsule from the same source, but said the sublingual is better because it goes directly into the blood stream. This worked for me as long as I take around 3000 units a day. I DID have tingling before I took that, mostly in my hands. However, you state that your B12 levels are HIGH. I find this really curious and would draw this to the doctor's attention.

You do not mention whether you are taking birth control or HRT. Be aware that estrogen affects the absorption of thyroid hormone because of a binding factor and because of this, frequently requires additional supplementation. Be sure to tell MAYO if this is the case.

You do not mention lipid panels or comprehensive blood tests. The lipid panel is most reactive to thyroid supplementation. Is your cholesterol high ? HDL, LDL levels ? How is your bone mass and the calcium/creatinine ? If you have a series of these tests, try to label them with the thyroid hormone dosage as well.

I made a post yesterday labeled "Pertinent Scientific studies....". It has some links you might find helpful in terms of the FREE levels and T3 supplementation.

This is all terribly frustrating and frightening, I know. But it sounds like you have really been advocating for your self and are to be commended for that. Just try to put together your story in a coherent way, as reflected in your labs and your pharmacy records....The fluctuations in your TSH, the changes in your FREE levels, your complete list of symptoms pre-and-post- operatively, any "time of day" variations in your symptoms, your basal body temperature, your reactions to heat and cold. This is a lot of work for someone who is feeling so unwell, but you must feel proud of yourself for getting to the MAYO and for being such a strong person that you are persevering for your health.

There are a few other members who have gone to the Mayo Clinic. You might make a separate post asking for their help in advising you how to prepare. I wish you the very best.
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