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Off thyroid - back on?!

I've been  off thyroid (misdiagnosed) for 43 weeks. Now my TSH is very high and doctor said to go back on a low dosage again. Is thyroid a life long condition? I'm confused. Will a low dosage of .25 hurt or help me? Thank YOU for any suggestions.
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Avatar universal
Sounds like you need a new Dr.Yes. Hypothyroidism is a lifelong condition.  The thyroid meds provide hormone replacement.  Not a cure.  Needs to be taken in the appropriate dosage daily.  For life.  Appropriate dosage level may change overtime.  I get tested for levels TSH and FT3 annually.  More frequent tests until the appropriate dosage is figured out.  Sounds like you need a new Dr in my opinion.  
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Avatar universal
We don't yet know for sure if your current thyroid levels are adequate or not.  I suspect that they are not, so I would not change your thyroid med dosage at this time and throw yet another variable into the mix.   I would stay the course until you get your D and B12 to optimal levels.  In the interim there are other things to consider.  

The possibility of pooling is a consideration; however, your ferritin was 114, and your cortisol was reported as being at about 60% of its range.  The problem with the cortisol result is that it was taken at about noon, which is the time at which cortisol levels have dropped significantly from the peak, which occurs at about 6 a.m.  Also the range given appears to correspond to a morning serum cortisol test, while yours was from a noon blood draw. Since cortisol drops so much from 6 a. m. to noon, I suspect that, if anything your cortisol levels are on the high side, which, if not causing pooling, it at least creates a need for higher levels of thyroid hormone.   Think of it this way:  high cortisol has a counter effect on thyroid hormone.  Higher cortisol levels require higher thyroid hormone levels to achieve the same effect.   I really don't know any way to resolve the question about your cortisol levels except with a diurnal saliva panel of 4 tests across a full day.   It is very difficult to get doctors to order those tests, but I would ask about it.

Also, your ferritin level, without any supplementation with iron, makes me think that you need a full iron test panel, which includes ferritin, serum iron, TIBC, and % saturation.  Are your white and red blood cell counts low enough for the doctor to be concerned?  If so, was there further testing done to try and determine cause?

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HI - I'll need to look up pooling not sure how that effects everything.white count has been low for years.I have Leukopenia. Last test was 3.0 -
Reference - 4.0-10.0. Red is 4.27-
Reference - 3.58- 5.40. So in the low end of normal. I've been to a doctor and had test about low white count.He's working with me but not sure what other tests he would o.k. there's a shortage of
Doctors with many not taking new patients cause of Medicare. Doctors appt .next week and hope for some answers. THANKS again so much for your help. Take care, Junie
Avatar universal
I meant to also ask if you are taking anything that might account for your ferritin level, since it is higher than I expected?
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Thank YOU for your comments. Are you thinking my thyroid is good and stay on the .50? I was hoping to get off the med and ask the doctor about that. What do you think?  I'll try to ask about the pooling of the blood. Cortisol test was taken about noon time. I had fasted for 14 hours. Ferritin  level not taking any other meds except the thyroid one and vitamins. My b-12 I think is improving.
It's at 462 - reference levels are.
180-914. I think it was at 277 before.
My white is always low ( it's been checked. My normal. ) Red is on the low end also. Do you have any other suggestions for tests?. Appreciate any help you can give. I'd like to get to the bottom of this. I'm not a person that enjoys going to the doctor so many times a year. Thank you,again.Junie
Avatar universal
Back before you started on the T4 med your Free T4 was .8 and your Free T3 was 3.50.  Compared to their ranges, your Free T4 was at 20% of its range, and your Free T3 was at 70% of its range.  Your TSH was 4.89 compared to current of 2.75.  Now on 50 mcg of T4 med, your Free T4  of 1.0 is at 40% of the range and your Free T3 of 3.56 is at 75% of its range.  Most doctors looking at only test results would say that you are fine and do nothing further.  A good thyroid doctor treats hypo patients clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being constrained by resultant TSH levels.  I say that about TSH because quite often TSH becomes suppressed below range when taking adequate thyroid med.  

So in view of your symptoms, you need to continue to work on getting your Vitamin D and B12 optimized.  I think you need to increase your daily dosage of D to 10,000 IU until you get it up to a minimum of 50.  You also need to continue with the B12 shots until you are in the upper end of the range.  

As for your thyroid levels, the thing I see in both sets of tests is that your Free T3 is much higher in the range than your Free T4.  So either your body is converting T4 to T3 more than normal in an unsuccessful effort to provide adequate thyroid function, or we are back to the possibility of  "pooling" of T3 in your blood.  Of the possible contributors to any "pooling", we talked about ferritin (which is adequate for you) and also cortisol.  I can't even try to evaluate your cortisol test without knowing when blood was drawn for the test.  Was it in the early morning?  
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Avatar universal
Before commenting on the test results we need to know the reference ranges for those, as shown on the lab report.  Also, please tell us about all symptoms you are having.  

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Good morning Gimel, thanks so much for replying. I'll list the results and references below.

TSH - 2.75  - 0.30-4.20
FT3 - 3,.56  - 2,.50-3.90
T4 -   1.0.    - 0.6-1.6

Ferritin - 114.5 - 11.0-307.,0
Cortisol Random - 12.1 - 2.,0- 22.6
B12 - is coming up now with the monthly shots. Vit D -30.4 - 30-100
So still low on that and taking 5000 a day. I'm still tired but doing somewhat better, I feel. Do you feel it's still the thyroid?  I've never felt good on the med and have gained weight from it, I feel. Thank you for your help and any suggestions you may Have. This site has been a great help to me. Hope you are well. Junie
Avatar universal
Sorry your May post got overlooked.  I still think you are hypothyroid.  Can't really be sure of what is going on without those tests for cortisol and ferritin.  Are you scheduled to have those done in August?
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I don't think my last post went through?
Oops , sorry.  I just had blood work done and will post now. Hope to hear from someone when time permits.
TSH - 2.75
T3 - 3.56
T4- 1.0
Ferritin - 114.5
Cortisol hasn't come in yet.
I go to doctors in 2 weeks. Do I still have a thyroid problem? Thanks for any advice.
I just check again and Cortisol is in.
12.1
Any answers for me? Thank-you!
Avatar universal
Sorry your May post got overlooked.  I still think you are hypothyroid.  Can't really be sure of what is going on without those tests for cortisol and ferritin.  Are you scheduled to have those done in August?
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Thank you! Good to hear from you. Yes, both tests in August a long with the thyroid tests.Going to have a sleep test next week.Trying to see why I'm still so tired. I've had two b-12 shots so far. Hoping it will help. Hope you are well. Take care, Junie
Avatar universal
HI, haven't heard from anyone lately. Seems I'm gaining weight on .50 thyroid med. Is this normal. Not eating more and I'm walking daily. Any advice out there? I know i can't just go off the med,right?  Hope to hear from someone when your time permits. Thank you!
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No,one there to comment? It's been almost a month since I posted this. Hope all is well. Take care,Junie
Avatar universal
HI - - don't think he feels I need those tests but I pushed and he o.k. them
I'm hoping the ,b-12 shot Will help and more  vitamin d. I'm on Medicare with a supplement that I had to lower. So have to pay something at times.
I'm not a doctor person so going all the time isn't my thing. I may try to schedule for 3 months not 4. Hoping for more answers. I appreciate you telling me about those tests. I wouldn't of known. I feel he's concerned and is doing his best for me. I just truly wonder about the thyroid. Hope you are doing well. Take care, Junie
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Avatar universal
There is no reason to wait until august to get tested for ferritin and cortisol.  That would just waste 4 months.  I'd ask the doctor to go ahead and get those done now.
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Avatar universal
Please excuse some of the errors. I'm doing this on my Kindle. I tried on the home computer and it didn't let me back on with my password.
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Avatar universal
Thank you both for replying. I appreciate your help and input.The doctor suggested a sleep test because of my on going fatigue even after a good night's sleep. Haven't gotten a call on that as yet. The ferritin and cortisol are to be done along with the other tests in August. 4 ,months between appointments. I'm taking 5000 of the vitamin d as he suggested. Your saying to take 10,000?! My husband and I looked how to do the b12 shot on u-tube. The needles weren't in so need to get those. I'm thinking we'll be o.k.we have had several pets over the years that needed shots and did it. Can't keep good my back to the doctor and getting charged es h time that's why I requested to do them on our own. Yes, well stay on the .50 and hope it doesn't cause ant issues. I had lost 60 + pounds and it took a year and a half. I've kept it off over 8 years now. I was off thyroid met for 43 weeks. Now I'm putting a few pounds on and wondering if it has to do with going back on the med again. What are your thoughts on this. I'm not doing anything different and he said I should stay the same and some lose. So I just don't know what's going on with my body right now. THANK YOU both again and hope to hear from you when time permits. Hope this fines you both doing well with your health. Take care,Junie
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231441 tn?1333892766
Hi Junie,

I will just jump in here about the D3.

You can buy D3 over the counter from a health food store.  You can get 5000 IUI pills.  You may need to take 2 of these (10,000 IUI/day to get your D levels up). Literature says such a dose is safe, and repeat blood test for D3 in a few months.

Self injections of B12 isn't too hard.  Did you work that out?

I feel that  your prescribed dose of T4 med at 50 mcg is likely not harmful.  I would be working on the B12 and D levels first and leaving the thyroid meds where they are for now.   You can always reduce / get off them later.
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Avatar universal
What symptoms caused the doctor to suggest a sleep clinic?  I think I would hold off on that until you get other things optimized and then see how you are doing.  

My thoughts are that the low dose of thyroid med will do no harm and I wouldn't  change right now.  When will you get the ferritin and cortisol tests done?  

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Just left a long message and it disappeared!!! I'll do again tomorrow.
Avatar universal
HI again, I hope everything is o.k. I haven't heard back from you. You've been so helpful just wanted your opinions. Hope to here from you again and all is well with you. Take care,June
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Avatar universal
HI, had the doctors appt. He will order the ferritin and cortisol test. Not sure if he felt necessary but will do it. He's again questioning if Medicare will cover. Well do it and go from there. Said to take 5,000 of D now!! ,,I asked for a prescription but said to try this first. I need to pick up but B12 shots at the pharmacy. I hope I can do it or my husband can.TO much $ to keep going in for one at the office. Keeping me on .50 for now. Asked if I could go off the thyroid med and he didn't think I should. Does thyroid '"bounce,",? I was cleared and off for 43 weeks when the specialist said no thyroid problem. Soooooooo if he didn't test it again we wouldn't of known? Have gained a few pounds and he said thyroid med should make you lose weight?  He wants me to go to a sleep clinic!!?? Medicare will pay. So guess I will. I feel vit d and b12 are the reasons behind it all. I'll Stay on the med for now. I don't think the low dosage will hurt,? Do you? I used to be on Armour and he hasn't mention that one and I forgot to ask again. I don't go back for 4 months now. I guess that's o.k. what are your thoughts on all this? You've been so helpful. I appreciate it very much. Are you well,? Here from you when your time permits.June
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Avatar universal
Thank you!! I'll get back to you soon.Take care,June
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Avatar universal
Your D is way too low.  Optimal is about 55.  B12 is also too low, should be in the very upper end of its range.  You need to supplement and optimize those.  You really do need to know your ferritin and cortisol levels.  

Since you are already taking the thyroid med, I think that rather than cutting it off right now, I'd wait and see the results from the ferritin and cortisol tests.  Nothing lost by waiting a bit longer.  Also I would wait and see what supplementing the D and B12 does for you.  
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Avatar universal
Your Free T3 level being so much higher in its range (113%) than the Free T4 (40%) makes me wonder if you have the problem of pooling of T3 in the blood. Note the following info.

"What is Thyroid pooling? This is when the thyroid hormone T-3 collects or pools in the blood and does not get into the cells.

How does T3 Pool? The cause of T-3 pooling can be any one of the following or a combination of the following:

    High cortisol
    Low cortisol
    High iron
    Low iron
    Medications
        beta blockers
        Amiodarone
        Iodinated contrast media
        Lithium"

Unless you are on one of the meds listed, it again points to the need to test for ferritin (iron) and also test for cortisol level.  The bet way to test for free cortisol is the diurnal saliva cortisol panel of 4 tests over the day.  Most doctors are not familiar with that and only order morning serum cortisol which is a total cortisol test, not free cortisol.  

Also what are your D and B12 levels?    What are the symptoms you are having?
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Good morning, thanks again for responding. Never heard of pooling. If I go off the med at .50 will I have to wean off ?  B-12
277 - vitamin d - 23.8. I'll ask for the ferritin and cortisol tests . I'm just very tired even after a good night's sleep and need to rest during the day( I don't nap). My
ADL' S are being effective. I'm feeling I don't have a thyroid problem and should of stayed off of it. The specialist said I didn't and when tested again the TSH went up. I go in tomorrow and
Want answers. Could you suggest anything else?  I've been taking the b' s and d' s trying to get it higher. Do I need a prescription? You've been so helpful I appreciate it. Hope you are well.I'm not on meds except the thyroid. Thank you. June
Avatar universal
Patients frequently hear that certain symptoms are age-related, especially fatigue for example.  One of the reasons for that can be that Free T3 diminishes as we get older.  That doesn't mean it has to be that way.  If the Free T4  and Free T3 are lower than optimal, regardless of age, than they should be increased as needed to relieve symptoms.

For right now, I think you need to prioritize getting your Vitamin D up to 55 minimum, and your B12 up in the very upper end of its range.  Also highly recommend testing for ferritin and the full saliva cortisol panel.  Your doctor will be even less receptive to testing saliva cortisol, but that is the best method to get a good evaluation.  Ferritin needs to be about 70 minimum. If it were me I would pressure the doctor by telling of the conversation with Medicare:  They have no list of tests they don't accept.  If the doctor says it it is a medical requirement, they typically accept.  
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HI again, just had lads done.
TSH - April - 2.03
FT4- April - 1.0
FT3- April - 4.09
Been on .50 of the med 3 months now. Below results in January.
TSH - 4.,89
FT4- 0.8
FT3- 3.50
I don't think it's the thyroid. What do you think? D and B12 is still low. Working on that. Still tired but don't want to Stay on a med I don't need or helping. Wonder if I should go back to thyroid specialist that said I don't have a thyroid problem!? It's old. Hope you are doing well. Look forward to hearing from you when your time permits. Take care ,June





Avatar universal
In answer to your question, I'd say yes; however, the most important indicator is symptoms.  Please tell us about all symptoms that you have.
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Mostly just tired.when I was diagnosed I was not over weight.I had lost 60 pounds it took one year and a   half. Keept it off 8 years now. On the.50 not feeling any better. I moved the appt to next month so it will 3 months.
I guess maybe it's the vitamin d and b12 being low. Some things I think are ,"age appropriate!!"'.We
Don't want to admit that. I think stress takes its tole on all of us.
THANK YOU again for replying .
Take care,June
Avatar universal
goolarra hasn't been on the Forum lately so I thought I would try to answer your questions.  First you need to be aware that serum thyroid hormone levels are the sum of natural thyroid hormone plus any thyroid med you are taking.  When starting on a dose like you are, the TSH will be diminished and thus less natural thyroid hormone produced.  Thus, when starting on thyroid ned, often thyroid hormone levels do not start to rise until dose is increased to the point that TSH is suppressed to the low end of the range or below.  At that point dosage should be gradually increased to raise your Free T4 and Free T3 enough to relieve symptoms.  

Tiredness may be one of those symptoms.  I expect that you likely have others that you just have not yet related to being hypothyroid.  Many forum members have reported that symptom relief required Free T4 at the middle of the range, at minimum, and Free T3 in the upper third of its range, or as needed to relieve symptoms.  

In view of your very low D and B12, I agree with goolarra that it would be good to correct those first and then pursue thyroid levels further if needed.  You need to get your Vitamin D up to 55 min., B12 into the upper end of its range, and ferritin should be about 70 minimum.

Just to find out about Medicare coverage of ferritin testing, I called and spent 25 minutes waiting around, in order to find out that they saw no reason why any test would not be covered, if the doctor stated it was a medical necessity.  Sounds like a doctor problem not Medicare problem.  Maybe the doctor really saw no need to run the test, in his opinion, and did not want to submit it and say it was a medical necessity.  
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Thanks so much for replying ! Yes, your right I think doctor doesn't feel the ferritin test is necessary. That was so nice of you to call Medicare and ask. Thank you!  Yes, I think the low vit D and b12 May be the cause of being tired. The specialist said I didn't have a thyroid problem. Then got tested again by my regular doctor and put back on meds . I really wonder if I have a thyroid problem!?  Hope this fines you well. Take care,June
Avatar universal
I did reply and don't see it there!? I'll request the t3 @ t4 @ ferritin for iron. You've been so helpful. After I'm tested I'll go back on and hope to hear from you again. Stay well, health and happy.
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HI again, just got put on .50
Of the thyroid med. Requested ferritin test. Doctor said not covered by Medicare,? I think my supplement would cover it.I requested the t3 & t4 with the tsh that wasn't ordered. Don't feel or see much difference. Still tired.
Hope you get this one.June
Avatar universal
Most doctors were taught in med school that TSH is the gold standard in thyroid testing.  It's not.  TSH is a pituitary hormone and a very indirect measure of thyroid status.  FT3 and FT4 are the actual thyroid hormones and a much more direct measure.  TSH is also very volatile and can vary as much as 70% just depending on the time of day the blood was drawn.

You should have your iron rechecked as well.  Ferritin is the important part of an iron panel when it comes to thyroid.
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