I know I am asking a lot of questions these days - sorry.
Please can someone comment on this more readable information of my thyroid data.
Both Antibodies in January 2017 - negative.
Ultra sound of neck in December 2015 and radio active iodine uptake scan at the same time confirmed inflammation to thyroid gland at that time (subacute thyroiditis) - not Hashimoto's. I had severe pain at one point in neck front which brought over active symptoms within days like tremors and severe night sweats and temperature.
TSH was suppressed then <0.05. CRP was 30 then.
I am trying to crack the reason for my pains, weakness and some sort of nervousness that comes and goes which I can feel in my chest. They are like mild palps but I thought you get them in hyper thyroid. Actually I did not get them in December 2015 or January 2016 when TSH was <0.05.
ECG twice in 2016 showed no problem.
D was less but not anymore.
B12 was less but not anymore
My hb is normally 12. (male - 45)
Ferritin Average (usually around 60). My hematologist wont let me have iron because I am a carrier of thalassaemia. Full iron panel done shows everything normal. I have the report. Nothing that I can say is low or bad. Iron supplements are bad for thalassaemia carriers.
thank you
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TSH ranging from 0.05 to 6.3 indicates autoimmune thyroiditis (Hashimoto's). Some patients are sero negative and have Hashimoto's diagnosed by the thyroid damage visible on ultrasound scan. I felt desperately unwell with euthyroid Hashimoto's. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies. It may be worth trying even though antibodies have so far been negative.
Thank you clutter. I am trying to cut down on bread and flour. But what is your suggestion on trying to aim for original TSH? I have already asked my GP that I wish to bring my TSH down to 1 as that's what it used to be. I am still to hear from her not that I am hopeful that they will give me a trial replacement.
There's no point in cutting down on gluten, if you are not cutting it out 100% you may as well eat as much of it as you like. You'll need to read up about gluten because it is in many foods not just bread and flour.
You would need to take Levothyroxine or some other thyroid replacement to bring down TSH. NHS won't usually diagnose hypothyroidism and prescribe Levothyroxine until TSH is over range ie >4.5 or FT4 is below range ie <11.0.
Thank you Clutter. I am learning about gluten. It is a difficult task. That's why first removing 2 main things as a first step. I am trying my best to get a trial replacement. If I get it, at least then I will know, if that is something that will help me. I am going to ask for another reading of TSH, FT3 and FT4. Antibodies they won't do because just been done 6 weeks ago. Do you think I should ask for Reverse T3? I have not learned much about RT3. Could I be having trouble converting as good as I should.
See even when my FT4 was 20.2, my FT3 was not any higher at all than when FT4 was 15.6. Does that sound like conversion issue? And when FT4 was 15.6, TSH was 6.3.
They should have given me a replacement when my TSH was 6.3.
I don't think rT3 is tested on NHS. Probably not necessary anyway because you aren't taking replacement and its unconverted thyroxine which causes high rT3 unless you are seriously ill (hospitalised) when rT3 is high to slow down the body to aid healing.
Your FT3 has been very good and pretty stable throughout. FT3 doesn't fluctuate as much as TSH and FT4. There's nothing to indicate you have poor conversion.
TSH rises when FT4 and/or FT3 are low so it's no surprise that when your FT4 dropped to 15.6 your TSH rose to 6.3.
So, I may be one of those people who need their FT4 at very top. Many people have said on this forum that some people feel good only when they are at their top (FT4) or even slightly elevated.
My belief is increasing that I need top FT4 and may be then, as you say, my tsh would drop to 1.
I am contemplating that my brain does not like to produce a TSH of more than 1, as that's what it used to be when I was fit before November 2015.
Thank you for your prompt replies. Is it ok if I get back to you after further developments at the doctors?
When it is said that someone needs high or elevated FT4 it is talking about people taking Levothyroxine.
Most people not on Levothyroxine would feel very well indeed with your November 2015 TSH and January TSH, FT4 and FT3 but something, not necessarily thyroid, was very off for you to have CRP 30.
Euthyroid TSH will usually range between 0.5 - 1.5. TSH responds to T4 and T3 levels. When T4 and T3 are low TSH rises to stimulate the thyroid gland to produce more T4 and T3. When TSH is low it is because the pituitary has detected sufficient circulating T4 and T3. You don't feel ill because TSH is high or low, you feel ill when T4 and/or T3 are too high or low.
Were both thyroid peroxidase (TPOab) and thyroglobulin antibodies (TgAb) tested? It's not uncommon to be negative for TPOab but positive for TgAb. As I said earlier the fluctuation in your TSH levels is very indicative of autoimmune thyroiditis (Hashimoto's).
Please do let me know how you get on at the doctor.
It was not 0.05. The report says <0.05. I don't know how much less than 0.05. And I had symptoms of over active thyroid then. So, clearly I can't afford a TSH of <0.05.
It doesn't matter. I had TSH 0.003 with FT4 35. It was the high FT4 which made me feel ill not the suppressed TSH. My TSH is usually <0.01 but with FT4 and FT3 within range I feel well.
I know you are very knowledgeable person. However, please do you want to read again about subacute thyroiditis. Also called De Quervains Thyroiditis.
Its viral in nature and is different from auto immune condition. Some call it viral thyroiditis too.
When I read this, I can completely relate to this. I had most symptoms in order described here. Also had RAIU scan which came back low. It says if it comes back low, this confirms the diagnosis.
I've read that Subacute thyroiditis can go on for 2-3 years not the 2-5 months BTF suggest. Your TSH has been getting lower after peaking at >6 so perhaps the thyroiditis is resolving.
Every doctor has said to me this 'resolving' thing. I kind of agree with it too. However, some patients become permanently hypothyroid. I have also read somewhere on sub acute thyroiditis that patient may need to be supported temporarily with replacement hormone. I agree 2 - 5 months is wrong. It is probably 1 year or so. Even if it is resolving, my concern is that either it may not resolve fully (which for me is back to TSH 1) or even if it does resolve fully over lets say 2 -3 years, that is too much for me. I believe support should be provided for that period with hormone replacement.
Resolve - as in gets better on its own in its own damn time while you lose the will to live
I think it is brutal that Levothyroxine isn't trialled in some patients to see whether symptoms improve but thyroid protocols are clear that TSH needs to be over range before a diagnosis is made. If your doctor won't trial you on Levothyroxine you could self medicate but you do risk becoming over medicated as your thyroiditis resolves and your thyroid levels improve. Self medication would preclude you from getting a hypothyroid diagnosis if thyroid levels worsened and you became hypothyroid. You would also need to arrange blood tests to check levels/dose periodically.
What would be helpful is to have your doctor check your ferritin, vitamin D, B12 and folate which are often low/deficient in thyroid patients and can present symptoms which may be mistaken for hypothyroid symptoms.
Thank you so much today for reading my rubbish and for reading and understanding it closely. I fully understand your point on self medicating like what are the drawbacks. Makes sense. I think I should be able to source some levo but i don't know whether I should or not? Someone is gone abroad and should be able to bring some and very cheap. I will have to request today.
My only request to the doctors has been to please let me try a small dose. If it helps, great. If it does not I can quit it. I was just thinking that trying a small dose for short period can't be very harmful straightaway, can it? Is it really super dangerous immediately, I have no idea.
B12 was low in March 2016 but was corrected by 6 injections. Then once in 3 months. I have recently me my hematologist who asked gp to give another loading dose x 6 on my request.
Antibodies for IF and the other one -ve.
Vitamin D was a definite diagnosis in November 2015. <13. Had risen to 94 in January 2016. Then dropped to 80 in July 2016. Was 54 last month. I am building up on it again. I am currently taking 5000 iu every day for about 3 weeks now. What do you recommend?
ferritin: I mentioned in original post (top) that its usually around 60 and my hematologist has checked full iron panel as well and says its fine. Being a thalassaemia carrier I need to avoid iron supplements. Hope you know about this condition which does not really cause any harm on its own. One can lead a normal life without treatment.
If your friend can source you some 25mcg Levothyroxine go for it. You should get enough for 3 months minimum but six months is probably a more realistic trial.
Vit D is optimal around 100. I'd increase dose to 5,000iu daily for a couple of months then reduce to 5,000iu alternate days and retest late May. Most of us will need to supplement 2,500-5,000iu Oct-Apr when ultraviolet light is too low to stimulate vit D.
Hey, thank you Clutter. I will ask her and lets see if she can get it. Still scared. And if she does, I will not take it without your support mind. You will have to help. It's nice to have people like you around. I wish I can be better too like you, I really do.
As expected, my GP, after consulting an endo, has advised me yesterday that they can not let me have a trial of thyroid replacement. GP is kind of convinced by my theory (she is nice) but she has no authority to prescribe it in my case. She can not go against the decision of a prof of endocrinology. She did offer me an anti depressant though for the pains and aches, which I refused. So, apparently, anti depressants do not have side effects but levo has.
At my request, she is repeating TSH, FT3 and FT4 next week. Also, vitamin D.
In the meantime, what I have got from overseas is Thyroxine sodium tabletes 25mcg.
Total 180 tablets (I think the total price is no more than £6). The manufacturer is glaxosmithkline - so quite a reputed one.
I think I am going to wait for the results of blood that will be taken next week on 8th March. In the meantime, I am going to get a loading dose of 6 B12 injections prescribed by my hematologist yesterday. I will come back to you when I am ready to jump in. My GP is going to try one more time for me but that will be subsequent to the next week's TFT results when they arrive and when I will have seen her again.
By the way, I managed to get another ultrasound of my neck yesterday because I had some pain few days ago and requested my GP that this really worries me. The ultrasound was completely normal, the radiographer told me. Must have been some sort of muscular pain in the neck just like many other aching muscles. Just when it comes to neck, I straight think of the pain that triggered all this.
I have my new results but these stubborn labs are really bad. My GP asked for TSH, FT3 and FT4 but this time they only checked TSH.
It's now 3.2. It was 2.7 in January. Can it cause pain in my hands. I have pains in lot of places but my hands are very bad, particularly my right hand for last 5 days.
I will be seeing my GP on Wednesday next week to find out what she wants to do. My vit d now is 95. I saw my hematologist this week who does not think b12 is the cause of my symptoms. I had 10 b12 injections between 30 January and 15 March.
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