newly diagnosed with autoimmune underactive thyroid

[RoseStar]

Sorry for the long post but I’m a newbie and wanted to give a decent background…

I had covid at 38 weeks pregnant in December 2020 and ever since, i have suffered with crippling fatigue, lightheadedness, brain fog, nausea, headaches and muscle aches and pains. Initially told it was long covid but then I was diagnosed with PoTS in March. I’ve also noticed my TSH has been rising ever since I had my son in January 2021. Doc did bloods, including TPO antibodies in October 2022 and nothing was out of range. Saw a gynaecologist in March as I have endometriosis and prolapses and he ran an autoimmune blood screen, including thyroid because of my symptoms. These were the results:

TSH 4.82 (0.30-4.20)

T4 12.9 (9-19)

Anti-thyroglobulin Ab 147 (0-115)

He referred me to an endocrinologist he knows and I fully expected him to just say get your bloods redone in 6months as I know this is usually GP protocol but he looked at my bloods, felt my thyroid and diagnosed me with Hashimoto’s. He put me straight on 100mcg (I’m 5ft8 and 13st 6lb, so I’m sadly overweight) and said send me your TSH and T4 blood results in 6 weeks.

TSH 0.39 (0.30-4.20)

T4 15.6 (9-19)

I can’t say I feel much better and have had heat intolerance, anxiety and itchy skin 😢

I know there’s people that have to fight to get seen before their TSH hits 10, so please don’t think I’m not grateful. I’m just scared I might be overmedicated, or not needing thyroxine at all?

I know I’m low in some vitamins, so am trying to now supplement… (god it sucks taking iron with constipation and a prolapse!)

ferritin 39.3 (10-200)

Vit d 81(50-250)

B12 539 (180-900)

Folate 5.6 (3-20)

[GlowCoach Administrator]

Pregnancy and childbirth are common triggers for Hashi's. Not great when you have a wriggling pink bundle to deal with 24/7.

As you have positive antibodies and symptoms + an over range TSH then all of these things point towards treatment. Current guidelines are pretty conservative but it is a life long condition and TSH can be affected by other things such as vital illness which is why they usually retest.

What brand Levo have you been taking? It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

The NHS often only test TSH, sometimes FT4, almost never FT3. FT3 shows the active hormone in your blood and low levels of FT3 can make you feel terrible with awful symptoms yet your TSH and FT4 look OK. I'd recommend you get a full panel to include all 3 tests.

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private postal testing early Monday or Tuesday morning.

Book the test for 9am or as close as possible and don;t take your Levo before the test. Take Levo after the test. Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

For low ferritin we usually recommend getting a full iron panel done. You don't want too much iron and it is often better to use diet as a means of raising ferritin if your iron panel is good.

You meantioned in a previous post about taking folate so what are you taking? Its better to take a B complex that contains methylfolate (the active form of folic acid). This is the best & cheapest at the moment. amazon.co.uk/Liposomal-Soft...

Heat intolerance is common in POTSies but making sure your FT3 is at a good level can help this.

[RoseStar in reply to GlowCoach]

wow thank you for such an informative reply - much appreciated! I’m shocked the endo didn’t ask for FT3 as he specifically asked GP for TSH and FT4. I will have to get this done privately - thanks for the recommendations. Endo requested iron and said it was fine (attached) and to just take an over the counter supplement as I’m vegetarian and have heavy periods. I have just started:

solgar.co.uk/products/solga...

And for folate…

solgar.co.uk/products/solga...

The thyroid tablets have always been Accord

Iron results

[GlowCoach Administrator in reply to RoseStar]

Even if FT3 is requested the lab often veto it, so private blood tests are the way to go.

Solgar are a good brand but their products are often pricey. It would be a lot cheaper and better for you to get the B complex I mention and start that once your current ones run out. A B complex helps keep all your B vitamins in balance.

Ferritin should be around 90 - 100 for best use of thyroid hormone.

As a vegetarian you will always struggle with iron/ferritin, B12 can also be an issue. Many members report this iron product has helped them. threearrowsnutra.com/en-uk/...

Take with orange juice or anything that contains vitamin C to help absorption.

Take iron 4 hours away from Levo.

[RoseStar in reply to GlowCoach]

yes I will definitely invest in that B-complex once I’ve finished by current Viridian high 5 multivitamin and the separate folate.

would it be bad to try and lower by dose to 75mcg Levothyroxine and get retested in 8 weeks at my GP?

[GlowCoach Administrator in reply to RoseStar]

What are you thinking about reducing your dose? You said you don't feel much better as it is.

Better to get all vitamins to optimal and get your FT3 checked.

[Gingernut44]

Perhaps you should try a different brand if you have itchy skin, it could be the excipients causing problems. I didn’t do well on Accord. It’s all trial and error to find the best brand.

[RoseStar in reply to Gingernut44]

yeah I literally come out in hives! What brand worked for you?

[Gingernut44]

I take Wockhardt. They only come in 25 mcg tabs I take 4 tabs, all at once, to make 100 mcg.

Accord gave me headaches, stomachache, bloating and constipation. Mercury Pharma gave me a 24/7 headache so I experimented with what Wockhardt I had left from being on 75 mcg and hey presto, no more nasty side effects. We’re all different so what worked for me may not suit everyone buts it’s definitely worth trying different brands. Only you will know which is best.

[RoseStar in reply to Gingernut44]

thanks I have asked my pharmacist and he said he can’t get hold of Wockhardt. Judging by thyroiduk, the only other option other than Accord is Advanz

[Gingernut44 in reply to RoseStar]

I’ve had the same problem with my last prescription - I get 2 months worth at a time and, although I have Wockhardt brand stated on my prescription, the Pharmacist decided to issue Mercury Pharma. As my husband picked up my prescription, he didn’t open the bag and brought it home. To his annoyance I told him to take them back. The Pharmacist said “we can’t get them any more” but another shop assistant heard him and said “yes we can” and told my husband to come back late the next day to pick them up. I cannot tolerate MP because of the acacia in them, if I could, I wouldn’t be taking 4 to make up 100mcg but would take 1 at 100 mcg 😱

These are fairy stories by Pharmacists who can’t be bothered to go to any trouble finding them on their system. I rang Wockhardt to be told that there was NO problem with production or distribution.

If I were you, I would ring around as many pharmacies in your area as you can (that’s what I did) to see who will get them for you then ask for your prescription back.

It beggars belief how these pharmacists fob people off.

You have to determination. Best of luck.

[RoseStar in reply to Gingernut44]

yeah I’m worry Advanz would be worse than Accord because it has the acacia powder in, which I see many don’t get on with! I phoned another pharmacy and they happened to have Wockhardt in stock, so I’m collecting that tomorrow. They did say they could put a note on my prescription but that there’s no guarantee as they just get whatever the supplier provides them with 🥺 They said it’s better to have a few options I get on with - well I’m not having much luck thus far!!

[Gingernut44 in reply to RoseStar]

Well done - stick to your guns, if you get on well with Wockhardt ask your GP to state Wockhardt Brand on your prescription, take no gaslighting, they are readily available so you shouldn’t have any problems. I’ve had trouble right from the start and have changed pharmacies 4 times so far. Things go right for quite a while then I get “we can’t get them anymore” which is total rubbish. I’m wondering if they have to pay more for them and try to push brands that offer special rates. It wouldn’t surprise me.