Can anyone give me some advice with my recent thyroid results. I have Hashimoto’s. My FT4 is on the high side and only just in range. Does anyone know what this means? My TSH is only just slightly over. I have read that normally the FT4 is low with hypothyroidism? My recent thyroid tests results are as follows;
TSH: 4.3 (0.2-4.00)
Serum free T4: 19.1 (10-20)
I know I need to get my TSH slightly lower and ideally would like this to be around 2.00. I am currently on a dosage plan of levothyroxine of 37.5mg everyday. When I was previously on a slightly higher dosage my thyroid went overactive so I am worried this will happen again and I’m not sure what dosage plan to try next. Currently awaiting a follow up endo appointment.
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Luci20
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Looking up your previous result , i can find ;Hashimoto's ~yes.
" Hi thanks for your reply. I had very bad side effects to taking 50mg just on 5 days a week and 25mg then on the other 2 days. My TSH went to 0.05 when doing so ( this is 43mcg/day).
I am now taking 37.5mg everyday to see what happens with this dosage. "
" My thyroid results are very up and down despite having only small levothyroxine dosage changes. The latest TSH result I had was 23.8 (0.2-4). (on 37.5mcg)"
And now it is TSH 4.3 with fT4 19.1 [10-20]
So when on 37.5mcg your TSH has gone up to 23 .8 and then down to 4.3 ?
putting aside the TSH for a moment, because it's hard to know what the heck it's doing , how have you been feeling on 37.5mcg ?
Yes my thyroid results have been very up and down. In August 2019 it went from being in range for the first and only time since my diagnosis at 0.86 and then flipped to 45.00 within 3 months. I had not changed my dosage during this time.
Then in May 2020 it went too far the other way at 0.05 and then only in July 2020 it went up again and was 23.8.
I immediately felt better when I started the 37.5 dosage but this week I have started to feel bad again with muscle aches. When taking the 50mg dosage I noticed that my throat felt swollen but felt fine on the days that I took the 25mg dosage and as soon I went onto taking 37.5 everyday, I stopped getting the swollen throat.
Hi there, well that's not an easy one, and i've got a bit of brain fade and just been presented with beans on toast , so i'll see if i can think of an intelligent reply in the morning. x
morning... my brain is sort of awake now I think , even though it's tedious , but given how wildly your TSH seems to swing around, if it was me i'd stay put on 37.5 same each day, for a bit longer to ensure stability .
That way you can get a third blood test done on that dose , and that should tell you whether your TSH does eventually settle down if you stay on the same dose for long enough, or if it is doing this swinging around regardless of everything else staying stable.
I know 6 weeks ought to be long enough to get it where it's going , but i do wonder if some people's TSH is just more 'reactice to tiny changes ad also just takes a lot longer to settle down.
I did have a further thought . which may be overcomplicating it, because these swings could just be the hashimoto's effect , but without more fT4/3 results it's hard to say , but ... there are a few hashimoto's patients who also have some of the TRab (Thyroid stimulating hormone Receptor antibodies) that are associated with Graves disease and there are 2 types of these , one is Blocking , and one is Stimulating , so depending which sort people have they can have the effect od a tug of war on your results.
And hashi's patient's never get these antibodies tested so we don't know who's got them and who hasn't, plus it's nearly impossible to test for the Blocking ones.
I have to go and chauffeur someone to work , but when i get back i'll look up the article i'm thinking of , it's somewhere in this site thyroidpatients.ca/2020/04/... but that might not be the right page.
(The other thought i had is that some people who struggle to raise dose can manage it better if they split the Levo dose Am and Pm ,)
Thanks so much for that. I think I will stick on this dosage for a bit longer and see if it settles. I have heard too that it can take awhile for things to settle down with dosage changes and giving it a bit longer seems like the best option for now.
I will try to get FT3 tested next time too. My GP will only ever test TSH and my endocrinologist requested the additional FT4. I am not sure why he didn’t also request FT3. I will ask about the TRab test too.
I've found the bit i was thinking of,( not saying it's what's going on with you, i don't know , and i don't suppose anybody does even your Endocrinologist if you seeing one) but it's an interesting possibility if you can get anybody to consider it and test you for different antibodies)
The three variants of the Graves’ disease antibody (stimulating, blocking, and cleavage) can coexist in the same patient.
One or another variant can dominate over the others over many years or months.
As these antibodies play a game of tug of war, thyroid gland secretion and pituitary TSH secretion are both victims.
Research has shown that TSH levels are often exceedingly high in patients with atrophic thyroiditis at the time of diagnosis. Over time, TSH-receptor antibodies can continue to fluctuate in Graves’ and atrophic thyroiditis, even after the thyroid gland is removed, destroyed, or fully atrophied.
In a person with this type of autoimmune thyroid disease, there is no such thing as an “antibody-ectomy.” Getting rid of the gland does not get rid of the antibodies to the TSH receptor.
For example, I am a case of Atrophic thyroiditis, and my TSH was over 150 at diagnosis. In some patients, TSH can be inflated much higher than that.
During my final three years and 9 lab tests on T4 monotherapy, My TSH fluctuated unreasonably in relation to Free T4 and small dose changes:
.
2013/08/11 — 112 mcg Synthroid T4
TSH 0.08* (0.20-4.00 mU/L)
Free T4 25.5* (10.0-25.0 pmol/L) *highest FT4
.
2013/11/25 — 100 mcg Synthroid T4
TSH 18.08* (0.20-4.00 mU/L)
Free T4 17.7 (10.0-25.0 pmol/L) *lowest FT4 at 51% of reference
.
2014/02/21 — 112 mcg Synthroid T4 * same dose as test 1 when TSH at 0.08
TSH 5.02* (0.20-4.00 mU/L)
Free T4 23.9 (10.0-25.0 pmol/L)
.
2015/05/20 — 112/125 mcg Synthroid T4 alternate days
TSH 4.66* (0.20-4.00 mU/L)
Free T4 20.9 (10.0-25.0 pmol/L)
.
2015/11/05 — 112/125 mcg Synthroid T4 alternate days
TSH 3.33 (0.20-4.00 mU/L) – no other tests performed
.
2015/12/15 — 112/125 mcg Synthroid T4 alternate days (40 days after previous test)
TSH 8.05* (0.20-4.00 mU/L)
Free T4 21.5 (10.0-25.0 pmol/L)
.
2016/01/29 — 125 mcg Synthroid T4 (dose raised from 112/125 to 125 on January 20)
TSH 3.72 (0.20-4.00 mU/L)
Free T4 21.6 (10.0-25.0 pmol/L)
.
2016/02/18 — 125 mcg Synthroid T4 (20 days after previous test. Feb 1-4 increased to 137mcg, but chest pains began Feb 1, so lowered back to 125mcg by Feb 5)
TSH 6.17* (0.20-4.00 mU/L)
Free T4 22 (10.0-25.0 pmol/L)
.
2016/03/21 — 100-112 mcg Synthroid T4. Dose lowered from 125 to 100-112 Feb 20 to March 3 due to day and night random cardiovascular spasms.
TSH 10.27* (0.20-4.00 mU/L)
Free T4 18.3 (10.0-25.0 pmol/L)
.
TSH ranged between 0.08 and 18.8, even while Free T4 was in the upper half of reference. At the same T4 dose and only -1.6 lower FT4 level about six months apart, my TSH was first suppressed at 0.8 and later elevated at 5.02. With the exception of the single suppressed TSH, I had an abnormally high TSH for this T4 result.
The quick TSH fluctuations are especially illustrated in 2016, when two tests were 20 days apart. TSH increased from 3.72 to 6.17 without a change in dose and a small +0.4 pmol/L increase in Free T4.
Meanwhile, my T3 level was extremely steady at a level just below reference, so TSH was not responding to changes in Free T3. To be specific, in the first four tests, my Total T3 was between 0.9 and 1.0 (1.1-2.8 nmol/L), and in the final four tests, my Free T3 varied between 2.9 and 3.4 (3.5-6.5 pmol/L). (My poor T4-T3 conversion is a subject for another post.)
It is only reasonable to believe, in light of the research, that my TSH level was responding erratically to fluctuating TSH receptor antibody levels, which were not measured, rather than responding in a logical fashion in relation to changes in Free T4 and/or Free T3.
Thank you for that. That’s very interesting. I do have an endocrinologist. Currently waiting to get my follow up appointment date. Will defiantly have a lot to discuss with him!
If you get any response other than "no dear , only Graves patients have raised TRab" i'll be very impressed. But until they test more 'oddly behaving' hashi's patients for them they'll never know any better... i suspect many of them simply put odd results down to 'not taking the tablets regularly', which would of course explain many oddities , but i'm appalled at how often that is all they can come up with as an explanation even when we've assured them we do take it properly.Good luck with the Endo.
let's hope he has an enquiring mind, and more than 5 minutes
Thank you! My doctors questioned if I had been taking my levothyroxine properly after my TSH swung from 0.86 to 45.00 and they were surprised when I said I had been taking my correct dosage everyday! Still don’t think they believed me!
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
What vitamin supplements are you currently taking
When were vitamin levels last tested
As you have Hashimoto’s are you on strictly gluten free diet
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Yes the thyroid tests were done first thing in the morning and I waited until afterwards to take my levothyroxine and to eat. Currently taking evening primrose oil. Vitamins have all been in range when tested but will ask about testing them again.
I know I need to get my TSH slightly higher and ideally would like this to be around 2.00.
Why on earth would you need to get your TSH higher? Most people are trying to get it below 1. You do know that TSH doesn't cause symptoms, whether it's high or low. It's the T3 that causes symptoms when it's too high or too low. And it's best to dose by the FT3, not the TSH.
When I was previously on a slightly higher dosage my thyroid went overactive
Well, I don't suppose it did. I don't suppose it's capable of being over-active, because you are actually hypo. And, even if it did go over-active, it wouldn't be the levo causing it, It appears you have Hashi's, so it's far more likely that it was the Hashi's - an immune system attack on your thyroid - that caused your FT4 to go over-range, and thus reducing your TSH - rather than your dose. Do you know how Hashi's works?
Hi if you read my full post, I have clearly mistakenly put higher instead of lower since my TSH is 4.3 and I would like it to be at 2. Not sure what help your comment is if you haven’t read my post properly and have jumped to that conclusion?
Also when you are over medicated or have some sort of thyroid attack, it can make your thyroid have the overactive symptoms, (racing heart beat etc....) and your thyroid goes lower then 0.2mg so again not sure how your comments are supposed to be helpful when they just seem to be criticising my wording.
I really appreciate anybody commenting on my posts and trying to help me but please don’t criticise people if they have not worded things how you think they should be. It just doesn’t help at all. People are on here for help to get more knowledgable but these types of comments will put people off from posting.
Well, sorry, but I would have thought it was 'helpful' to know what exactly is happening with your disease and that the fact that you went hyper had nothing to do with your dose of levo, but the disease itself. Maybe you didn't understand my wording, I don't know, but I thought I had read your post correctly. My mistake.
No worries but I am well aware that I have Hashimotos as stated in my post. I just think people on here are sometimes too quick to comment regarding terminology being medically accurate or to the way they think it should be written which then puts people off from posting in case someone comments on this.
I know I don’t have hyperthyroidism and never stated that I did but my thyroid did go below 0.2 so it is easier to state this temporary went overactive (doesn’t matter how whether due to over medication or a thyroid attack) and I never stated either just that it did go overactive at the same time as having a dosage increase.
Well, I'm sorry, but I totally disagree with you about terminology. The point of terminology is that we all know what we're talking about. I took your post at face value, which indicated that you didn't know anything about Hashi's and really thought you had 'gone hyper', because a lot of people do believe that - even doctors! And, I'm afraid that reactions like the one above put people off responding and trying to help for fear of getting it wrong and giving offence. Taking the easy way out isn't always helpful. If you want precise help, you have to give precise information.
Well I completely disagree with that. I think it was fairly clear from my post what I was talking about! Also clear that I had mistakenly put higher instead of lower when I stated I wanted my thyroid to go to 2 from 4.3. I never thought I had gone hyper and never stated so!!! My thyroid went to 0.05mg so yes did go temporarily overactive. I don’t think your response was helpful at all. If you thought I knew nothing about my condition, you could have politely stated information and facts without jumping to conclusions. End of.
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I think , even though it's tedious , but given how wildly your TSH seems to swing around, if it was me i'd stay put on 37.5 same each day, for a bit longer to ensure stability . 
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