Hi everyone I’ve been lurking for a while and I’m wondering if I could ask for some advice.
I’ve been diagnosed hypothyroid for 10 years now but for the last 18 months or so I’ve been struggling to find the right dose of thyroxine. When my TSH went very low I got severely anxious and jittery but now it’s high & im stuck in bed feeling horrendous.
I don’t know if it’s my brain fog stopping me making sense of it all but I was wondering why my T4 is now in range ( i know it’s only just) when my tsh seems to be getting higher?! Everything I read says this happens in early stage hypo but I can’t find anything about it in later stages? Is it just one of those things?
I’m going to get a medichecks of my T3 as the last time I had it checked when my TSH was at its lowest it was barely mid range so lord knows what it is now my TSH has gotten so much higher.
I also have pernicious anaemia - I have injections & borderline Vit D last time I checked which I’m supplementing daily.
Any knowledge gratefully received thanks so much!
I forgot to add I’m currently on 50mcg thyroxine daily with 75mcg twice weekly.
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MissOphelia
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Have you ever had thyroid antibodies checked - Thyroid Peroxidase/Thyroglobulin? If not I think you should.
February/March 2019 are showing hypo results. September 2018 shows a "hyper" or over medicated result. These are typical swings common to autoimmune thyroid disease aka Hashimoto's which can be confirmed by postive thyroid antibodies.
I’m going to get a medichecks of my T3
I wouldn't do this in isolation. It needs to be tested at the same time as TSH and FT4. If you're going to get a Medichecks test, at the least get a Thyroid Check PLUS which tests TSH, FT4, FT3, TPO and TG antibodies.
If you haven't had ferritin checked, or folate, I'd go for the Thyroid Check ULTRAVIT as this includes all those thyroid tests plus all the important vitamins - Vit D, B12 (which I know you wont need), Folate, Ferritin. If you're supplementing with Vit D it's best to check twice a year to ensure you're supplementing at the right dose and achieving the recommended level (100-150nmol/L).
Every Thursday Medichecks have a special offer on a thyroid related test. If ULTRAVIT comes on offer it usually has a discount of £20. If the test you want isn't on offer, then you can use code THYROIDUK which gives 10% discount.
I forgot to mention yes I’ve had my antibodies done they’re both very high.
Ah, so this confirms Hashi's. This is where the immune system attacks the thyroid and gradually destroys it.
When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return and you may go into a "hypo" swing. Thyroid meds can be adjusted slightly at these times if necessary.
Unless a GP knows about Hashi's and these swings, then they panic and reduce or stop your thyroid meds when you have a hyper swing.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here, although there are no guarantees it's worth trying for 3-6 months.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies.
You already have PA and low Vit D.
My folate I had checked recently & is ok.
But is "OK" optimal. It's recommended to be at least half way through range.
I struggle to tolerate iron in all forms so it’s a bit of a nightmare!
Have you had an iron panel and full blood count done? Have you been diagnosed with iron deficiency anaemia? If your ferritin was below range you could have an iron infusion if you can't tolerate iron supplements. If your ferritin is low in range but not below range, then you can possibly raise it by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
Thanks so much again @seasidesusie I will look into everything you’ve suggested.
Looking at my folate result it’s around mid range.
I’m not got iron deficiency anaemia currently although I have had in the past.
I last had a fbc and ferritin bloods etc in December, my ferritin was 31 which is the highest it’s ever been, (it was once 3) so I definitely need to work on upping this.
As you say, I have in the past mentioned to doctors about the antibodies only to be told they’re irrelevant & made to feel like I’m stupid.
I did try 3 months gluten free once but didn’t see a huge improvement in symptoms but will try & give it another go for longer I think.
Thank you again for your wonderful advice I’ll definitely take it all onboard.
In September your freeT4 was right at the top of the range, and TSH very slightly under. These are the kind of results most people would like to see when on Levothyroxine, as most people need freeT4 high or slightly over range. Don't worry about the TSH, as we nearly always need it under range to feel well.
However, sounds like you didn't feel at all well on this dose. It's possible your hormone levels were this high due to a Hashis flare, which 0would be likely to feel rubbish.
Is this when you were on 75 mcg of Levothyroxine? If I saw just these results and heard you felt bad, I'd have suggested a very small dose reduction, maybe dropping to 50 mcg a few times a week. By the time you were retested, you could see if it was a flare up or if you were stable with similar levels.
From November onwards, your results look very undermedicated. TSH is only really useful to identify extreme undermedication. Usually once on thyroid replacement we want a TSH well under 1, and anything above a 2 is very high. In November yours went up to 5.98, which really shows your body is calling out for more hormone. At this point freeT4 is about a quarter of the way up the range, which is also far too low. The minimum it should ever be is halfway up the range, but most people once on medication will need it at the top.
At this point you should have been given a dose increase, as these were already very low levels.
Moving onto Feb and March these are absolutely terrible undermedication. The numbers are easily bad enough to get a new diagnosis by even the most withholding doctors. FreeT4 scraping along the bottom of the range, and TSH in the stratosphere. I'd expect symptoms to be absolutely terrible on these results. TSH is slightly higher later when the freeT4 is a bit higher. This is perhaps because TSH can be sluggish to initially act, but it's becoming more and more clear to the body that it's not getting the hormone it needs.
It sounds like you may have been advised that a freeT4 anywhere inside the range is fine, but this is not the case, with thyroid hormone it really really matters where you fall in the range. On thyroid hormone replacement we tend to need a high freeT4. This freeT4 is a storage hormone, and your body must do the work to convert it into T3. This can be a hard task for ill people so we need plenty of it.
TSH stands for thyroid stimulating hormone. This is released by your pituitary to call out to the thyroid to make more hormone. The higher it is the more your body is calling for more. On hormone replacement we need to provide enough hormone for this to be very low.
Saying all that, symptoms are more important than anything else. It sounds like you've had an unpleasant experience with feeling overmedicated in the past. But also you definitely feel undermedicated today. You don't mention what symptoms were like over the 4 measurements. I'd have expected symptoms to become bad from November onwards as the numbers show substantial undermedication, but all of us are different, so it's possible you felt a bit different from the usual prediction?
In terms of thyroid I would suggest an immediate increse to 75 mcg every day, and a blood test in 6 weeks. Usually I'd expect a person to need several increases and retested to get their levels up, but it's possible you are very sensitive to increases.
But of course you must also attend to all the vitamin issues SeasideSusie has suggested. We need optimal vitamins in order to make use of thyroid hormone. So if your has been reacting unusually it may be because of vitamin deficiencies.
SilverAvocado Thank you so much for all your advice it's so appreciated.
Yes when my levels were very low in September was when i felt very jittery hence they reduced me back down to 50, at first i felt better as the anxiety subsided but then gradually as you say (but especially in the last 2 months) i've started to feel terrible in regards to hypo symptoms.
I am really sensitive to increases in thyroxine and any medications in general i seem to really react to. Definitely will look at trying to sort out my vitamin levels.
The Drs don't really treat it as urgent & last time i had to pester them ( i can see my results online) because no one rang me, it feels pretty urgent when you feel so poorly doesn't it!
Thank you again for your explanation it's really helped, i've been feeling very overwhelmed, so truly thank you xx
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