How can I stabilise my TSH levels when I have s... - Thyroid UK

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How can I stabilise my TSH levels when I have serious Long Covid?

mabi2019 profile image
11 Replies

I have had Hashimoto's since 2003. I am told I have very little thyroid left. I had Covid in September 2020 and was ill for six weeks, including two weeks in hospital. I am on Levothyroxine, but since I had Covid my TSH levels have varied between about 0 and 7, so that each time I am tested (usually every three months) my dosage of thyroxine is changed again, so it goes up and down like a yoyo between 75 and 125mgs. I have neurological Long Covid symptoms of neuropathy, myalgia pain, fatigue, insomnia and concentration, memory and cognitive problems. This includes serious difficulty with speaking, reading and writing!

Can anyone suggest how I can stabilise my TSH and thyroxine levels?

TSH 1.090 uIU/ml (0.270 - 4.200)

FT3 3.38 pmol/l (3.1 - 6.8)

FT4 18.4 pmol/l (12.0 - 22.0)

Cortisol 9.2ug/dl (2.3 - 19.4)

Vitamin D 25(OH) 63.10ng/ml (30.00-80.00)

Ferritin 15ug/l (13 - 400)

CRP 1.52mg/l (<5.00)

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mabi2019
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11 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Bless you, what a nuisance. I'm not so experienced in looking at numbers, however, I can see from your results that you are deficient in iron - Ferrritin below NICE recommended level and should be treated. Also your Vit D is too low.

The experts here also recommend testing and supplementing Folate and B12. Selenium can be supplemented to help convert your Levo to the active hormone also. You may also benefit from a magnesium supplement.

Many people, but especially hypo folk are deficient or at least sub optimal in a number of vitamins. getting them optimal may well improve your overall symptoms and level off thyroid blips.

sue_b profile image
sue_b in reply to Jaydee1507

My Endo always checks I am still taking my selenium and as Jaydee comments, Folate, B12 and Magnesium all have to be watched as there does seem to be a link with inadequate digestion/hypothyroid/getting older. I supplement them all as I go too low otherwise (and Vit D because I go below 40 in that if I don't). There are various things you can take to assist your digestion.

Also, I think, very important, your microbiome probably needs attention, it is the seat of our immune systems. If you are not familiar with this there is lots of info online but you can go the food route (many options) or do that and top up with a multi-strain live bacteria capsule. I don't want to advocate for a particular author but there is a very good book with recipes by *** ***** which is concise and thorough ; so much easier than dealing with the internet, I find. Send a private message if you would like the name :-)

greygoose profile image
greygoose

With a combination of covid and Hashi's, you probably can't. But, it would help if your doctor stopped dosing by the TSH. That always produces this see-saw effect. The most important number is the FT3 - although doctors have no idea about that - or even what it is! But, yours is very low, at the moment, and you're not converting well. That's possibly due to covid.

Add to that the fact that numbers are going to fluctuate with Hashi's, due to the way it works. So, if it were me, I'd tell my doctor to stop messing about with my dose and leave me on 125 mcg, and then adjust it myself as I felt the need. Absolutely no reason why you shouldn't be able to do that.

You have to give yourself time - lots of time - to get over the covid. It won't happen over-night. But, your doctor playing see-saw with your dose won't help. Avoid testing for the time being, it's obviously going to be erratic with those three elements involved. But cutting out the middle-man - doctor - will go a long way towards feeling better. It will eleminate the stress involved, for a start. And, he doesn't really know what he's doing, just feels he has to be seen to be doing something, and anything will do. :)

tattybogle profile image
tattybogle

Hi mabi2019. Doctors Yo-yo ing the dose around may be part of the problem.

They sometimes make relatively large changes to dose (25mcg) when a smaller adjustment was all that was needed (12.5mcg at most ).. this can lead levels going to far the other way and then having to adjust dose back again... and so on .

Also sometimes they reduce dose just because they were panicked by a slightly low TSH , but if T4/T3 levels and symptoms had been considered as well as TSH . there may not have been any real need for a reduction at all .

if you can let us know the dose changes since covid , (and the blood test results that led to them ) we might be able to help you make more sense of what has been going on .

SeasideSusie profile image
SeasideSusieRemembering

Mabi2019

Your Vit D level is not low, it is very good and doesn't need to be higher.

Your unit of measurement is ng/ml and the recommended level, according to the Vit D Council, Vit D Society and Grassroots Health is 40-60ng/ml.

Jaydee1507 has confused the unit of measurement with the UK one of nmol/L which has a recommended level of 100-150nmol.

Your Ferritin is dire, it's recommended to be half way through range. Yours is so low that it suggests iron deficiency. Your GP should do an iron panel to include serum iron, transferrin saturation percentage, TIBC and Ferritin, this will show if you have iron deficiency. You should also have a full blood count to check for anaemia. It's possible to have iron deficiency with or without anaemia.

Jaydee1507 profile image
Jaydee1507Administrator in reply to SeasideSusie

Indeed. Rooky mistake! I'll look more closely next time. 😀

Marz profile image
Marz

Very Low Ferritin and FT3 symptoms could well be mistaken for long covid. When poorly the body can use up B12 stores too - so do you know your level ? Are you supplementing ?

Dosing you by the TSH result is WRONG - as discussed here on almost a daily basis. Stand firm ...

WhyAmISoTired profile image
WhyAmISoTired

With those neurological symptoms I would make sure to check your B12 levels! Stress such as a stay in hospital can deplete B12 stores.

mabi2019 profile image
mabi2019 in reply to WhyAmISoTired

Hi, thanks for all your feed back, i 've been taking B complx all the time, plus selenium, plus vitamins everybody here mentioned, and just got my homocystein result which is normal: 8,9umol / L (5-15), so I still find it difficult to know what to do. I'll follow up the suggestion to test for iron deficiency, but have had considerably little stress this year, and have to get back to work from october, which will increase stress greatly. So generally, it seems quite a complicated matter, especially that there other post-covid problems that are getting worse ll the time.

WhyAmISoTired profile image
WhyAmISoTired in reply to mabi2019

Yeah, that's really tricky. Have you read the paper "The Many Faces of Cobalamin (Vitamin B12) Deficiency"? I found it very interesting. In particular this may be relevant to you: "Serum vitamin B12 tests may fail because many people with symptoms related to cobalamin deficiency may have serum vitamin B12 levels above the lower reference level of 140 pmol/L. Although several factors may be of influence, in a considerable number of cases this issue can be caused by the earlier use of oral supplementation with multivitamins or high-dose oral vitamin B12 preparations. It has been reported that even a dose of 10 μg/d can increase vitamin B12 levels to more than 200 pmol/L in elderly individuals (>65 years). Oral supplementation may increase the serum vitamin B12 level but often not enough to replenish the vitamin B12 levels in the tissues unless very high doses (1000-2000 μg/d) are used."

I also just learned that copper deficiency can mimic B12 deficiency symptoms.

bookish profile image
bookish

I'd agree that you need to check your B12 levels, but would caution that your serum may look fine and it still be a problem. Covid affects one carbon metabolism/folates cycle as well as using up your vitamins and minerals, so getting those optimal again should help. You may find this interesting mdpi.com/1422-0067/23/8/418.... Best wishes

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