advice so i don't get fobbed off by my GP

[fedupfran]

my backgroud is.... I've been hypothyrodic for 16 years (post pregnancy condition) and currently take 215mg per day. I'm mobidly obsese and have been unable to lose any weight in over 15 years. I recently went to sri lanka for a month and despite the heat and the lack of calorie laden food i didn't lose any weight. As a recent experiement i joined a gym and went 5 days a week to work out with a trainer for a full month and lost 2lbs. my calorie in take is averaging around 2000cals. My weight is 21st 9lbs.

I have constant symptoms of having low thyroid levels - i have flaky dry skin on my legs, feet and even inside my ears. I have water in my ears and my hair and eyebrows and often my eyelashes fall out, i have lactated for the entire lifespan of my youngest son (he's 16), i have a pinprick rash on my feet, water retention and visual disturbances and headaches. that said I realise my weight is a contributory factor to some of these symptoms.

A week ago i asked my GP to address all these low grade symptoms and he ran bloodtest.

I was told the tests were normal. So i asked for them to be explained. The are as follows:

TSH   -  0.22
T3      -  4.9
T4      -  2.4
prolactin level   - 160

I'm a bit confused by this as all the thyroid test show me to be borderline hyper *(again perhaps my weight is being taken into account) I always thought there was only a link between hypothyroid and raised prolactin levels. Am i incorrect?

I'm looking for some advice as to how to approach this with my GP who didn't ask to see me. (i made an appointment to see him this coming Friday) Can anyone offer me some guidance as to what i might suggest if the GP continues to be unconcerned? And/or some links to sites i might read before my appointment. I'm just so fed up with being ignored and living with low grade symptoms and i suspect he's going to fob me off again!

sorry this is so specific and so long ... any help and support is much appreciated

[gimel]

Well, some progress anyway.  LOL  Can't believe he never heard of T3 meds.  Well, now you will have to get prepared for the Endo.    At least you have a lot more info and knowledge than previously.  That should help you a lot.  

Please keep asking questions, so that we can help you get ready for that appointment.

[fedupfran]

I can't believe what happened. After all your advice i felt fairly well prepared for any potential answers or points he was likely to raise... what i wasn't expecting was what he actually said...

He said he had never heard of any T3 treatments! And after a bit of a struggle he agreed to refer me to the endocrinology dept. When i said that would take months i asked if he could speak to them to see if they might guide him in beginning to change my treatment but he's only holiday for 2 weeks. He has agreed reluctantly but I don't expect anything positive to happen. Particularly if the endo docs go on my test results.

I guess i just have to put up with how i've been feeling for a while longer!


Thank you so very much... i really can't express how grateful I am because had you not taken the time to reply with such detail, i'd have had no choice but to accept my GP's ignorance

[gimel]

Most doctors don't know best when it comes to thyroid problems because they were trained to rely so heavily on TSH, which is unreliable, and the reference ranges, that are incorrect.   So our only options are to find a doctor that knows better than that, through personal experience, and is willing to treat clinically, or the other option is to try to work with the doctor by providing information to influence a different approach.  Sometimes you also have to stand up and be very assertive.  This approach also requires that you know enough to get the doctor's attention and cause him question whether or not he could actually be wrong.  

FT3 needs to be in the higher end of the range to relieve symptoms, say 6 or higher as necessary to relieve symptoms.   FT4 needs to be somewhere around midpoint of its range, which is 17.5.  The resultant TSH level does not really matter.  TSH causes no symptoms.  It is basically only an indicator of thyroid hormone levels.  If the thyroid hormone levels are within the range, the doctor should not have any cause for worry.

[fedupfran]

thank you so much for the advice... i'm trying to absorb as much as possible but with brain fog it's not mean feat to feel sharp and prepared.

I'm still struggling to understand the T3's & T4's... am i right to think that i want my results to change so that the T3 goes down in number to nearer the 3 end of the range? and the T4 to go up in number to closer the 10 range?

I'm dyslexic so the up and down is jolly confusing!

i'm really nervous as i've always been brought up to believe that GP's know best and so the idea of having to be assertive just to feel fully awake and half human again seem so unfair.

anyway thanks again and i'll post the result ... fingers crossed for a positive report!

  

[gimel]

Since you are going to be seeing your GP tomorrow, I'd like to get you as prepared as possible.  So the first thing I suggest is to copy this link and mark the hypo symptoms you have.  Then take a copy with you to the GP and point out that you still have all those hypo symptoms, and tell him the reason is that your Free T3 is too low in the range.  

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html

If the GP argues that any test result that falls within the range is "normal", tell him that  the range was established the same way as was done for the old TSH range of .5 - 5.0.  Namely they took all the available test data and established the limits so that 2.5% wold be expected to fall out of each limit.  When they finally accepted the fact that there were a lot more hypothyroid patients than 2.5%, they went back and purged suspect hypo patient data and recalculated a new range at .3 - 3.0, which was a huge change.  Unfortunately this has yet to be done for Free T3 and Free T4.  If the data bases for Free T3 and Free T4 were similarly purged and the limits recalculated, the new range would be essentially the upper half of the current ranges.  For this reason to truly be average for Free T3 and Free T4, you need to be in the upper 25% of the current range.  This is why hypo patients need to have Free T3 in the upper part of the range to relieve symptoms.  And tell him that is what you want to do for your symptoms, that you need to reduce your T4 meds and add some T3, either with a T3 type med, or with a combo T4/T3 med. Tell him that you are tired of suffering with hypo symptoms due to low Free T3.

If the GP tries to argue that your TSH is too low already,  tell him that  studies have shown that a majority of patients taking large doses of thyroid meds have their TSH levels suppressed by the meds.  This does not mean that you have become hyper, since you do not have hyper symptoms, and your Free T3 is not excessive.  If the GP tried to tell you that low TSH causes heart problems and bone loss, tell him that bone loss is caused by other hormonal deficiencies.  If bone loss (or growth) conditions already exist, then the higher metabolism from higher Free t3 would only speed up the process, but that is not a reason to not prescribe T3.  As for the heart issues, if you notice any effect on pulse rate, or palpitations, you can quickly reduce the meds to alleviate.  

I think I would also give him a copy of the link I previously gave you on clinical treatment.  Here it is again.

http://hormonerestoration.com/files/ThyroidPMD.pdf


So remember what your fellow UK member said about telling them what you need and be prepared to dispute any excuses they give you.  Don't give in.  Just insist on getting the medication you need to raise your Free T3 level enough to relieve symptoms.

[fedupfran]

that makes perfect sense and the pdf doc was an interesting read. Albeit it took me three attempts to read with my poor concentration!

I phoned the surgery t'day and after a long drawn out 'I can't give you that' followed by a large dose of 'what you do want with that' they finally coughed up the test ranges.

TSH range - 0.35 - 3.30
T3 range - 3 - 7
T4 range - 10 - 25
prolactin range - 53 - 520

Don't know if this makes a difference to what you said earlier gimel...

I'm a bit nervous of my GPs reaction if i say ... that i'd like to be put on T3. Anyone been in the situation of floating this idea?


thanks

[gimel]

Your TSH is low because of your dosage of thyroid meds.  But this doesn't mean anything because the majority of patients taking large doses of thyroid meds have their TSH suppressed.  The doctors don't understand that and decide you have become hyper and want to reduce meds.  Wrong.  My own TSH has been about .05 for well over 25 years without ever having hyper symptoms.  In fact I had lingering hypo symptoms until I found out about the importance of Free T3 on this Forum and got mine tested and found it to be in the low end of the range, even though I was taking 200 mcg of Synthroid.  I got my doctor to change my meds to include a source of T3 and now my Free t3 is 3.9 (range of 2.3 - 4.2), and I feel best ever.  

Don't really know about your thyroid levels affecting your prolactin level.

I should warn you that you should not assume that just because the doctor is an Endo, that he will be a good thyroid doctor.  I'd say that most of them are very rigid in their "Immaculate TSH Belief" and only want to diagnose and treat a patient based on TSH.  Many others only use "Reference Range Endocrinology" and will tell you that any thyroid test result that falls within the range is adequate.   That is very wrong also.  The ranges are far too broad.  That's why so many members report needing their FT3 level in the upper third of the range.  

That is why I described how a good thyroid doctor would treat you clinically.  That is the kind of doctor you need to find, or you will have to give your doctor lots of information and get him to change his treatment of you.  I know from other UK members that this is not always easy.  One of those members told me this.

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

So, we'll be glad to give you all the information you would like to have, in order to get you prepped for that.  

[fedupfran]

thank you so much for taking the time to reply. I really appreciate it. I am indeed in Scotland. And now you've typed it they were free T's.

Am i understanding correct that altho' my TSH looks high this might be artificially increased because i'm on such a high dose of thyroxine?

If i am indeed failing to convert enough T4 to T3 not only would this explain my persistent symptoms but also my high prolactin levels?

Thank you again because at least now i can talk to the results with some insight, as i need my GP to agree to refer me to an Endocrinologist as there is no self referral option here. Terribly frustrating as you can imagine!

I'll let you know the outcome when i've been to see my Doctor.

[gimel]

Yes, you should be able to get the info from the lab report.  Are you by chance in the UK?  

If I go ahead and assume that your tests are for Free T3 and Free T4, rather than Total T3 and Total T4, and I also assume that the reference ranges are close to those that I see very often, then what I would guess is that your FT4 is above range, due to the high dosage of T4 med.  Also, I expect that your Free T3 result is very low in the range, which is consistent with still being hypo.  Although most doctors in the UK (again assuming ) would say that your TSH is indicative of actually being hyper, you should know that TSH is often suppressed below range when taking large doses of thyroid meds.  You are not actually hyper unless you have hyper symptoms due to excessive levels of the biologically active thyroid hormones, Free T3 and Free T4.

Another important thing you need to be aware of is that the majority of hypo patients taking large doses of T4 meds do not adequately convert the T4 to T3, resulting in Free T3 levels that are too low to relieve symptoms like those you mention.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important to you, not just test results.  Many of our members report that symptom relief for them required that Free T3 was adjusted into the upper part of its range and free T4 adjusted to around the midpoint of its range.  Free T3 is the most important of the thyroid hormones, because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.  Here is a good link that you can read about clinical treatment.  the link is to a letter written by a good thyroid doctor for patients that he is consulting with from a distance.  The letter is sent to the Primary Doctor of the patient to help guide treatment.  

http://hormonerestoration.com/files/ThyroidPMD.pdf

[fedupfran]

I don't know was hard enough to get that much from the surgery. Will they be able to tell me the ranges?

[gimel]

What are the reference ranges that go with those thyroid test results.  They vary from lab to lab and we need to be able to assess where your results fall within the ranges.