Thyroid tests normal 😳🤔

[Viio3]

Hi so I have been diagnosed about a year ago with hashimotos. My TPO was really elevated by quite a bit. I have recently felt that my hair was falling out a lot again and that my skin was super dry. On the advice here I took the tests from the nhs website where you Pay and do it yourself. So these are the results they say normal. How can that be? All normal? Can someone just recover from hashimotos? I am just surprised. Thanks so much

[greygoose]

No, you can't recover from Hashi's, but levels can fluctuate because of the way Hashi's progresses.

With Hashi's, the immune system mistakes the thyroid for the enemy, and proceeds to destroy it. During an immune system attack on the thyroid, the dying cells release their store of hormone into the blood, causing FT4 and FT3 levels to rise, and thus the TSH decreases. The Frees might go quite a lot higher, or just a little, it depends how much hormone was being stored.

Are you not taking any thyroid hormone replacement (levo)?

[Viio3 in reply to greygoose]

I am not taking anything as my GP thinks I don’t need it yet. I am also in Peri so she has put me on hrt first to see if that calms things down. Should I repeat this test again and when? Thanks so much

[greygoose in reply to Viio3]

So, how do you feel? Your Frees are a little low, but I expect she's only looking at the TSH and thinks that is that is 'normal', you must be alright. But, if you have hypo symptoms, you'd probably benefit from some levo.

I really can't see how taking HRT can have any effect on Hashi's, they are two different things.

Might be a good idea to have another test a couple of months after the last one. You certainly need to keep an eye on levels because they could dip at any time.

[Viio3 in reply to greygoose]

Thank you. I will repeat that test again in a couple of months. When I asked for thyroid test she said she only does them every 6 months so I ordered one myself and did it from the web you guys recommended. And these are the results. It’s hard because I don’t know what symptoms are my peri and what are hashi. I have dry skin hands and feet, hair falling out, nail (absolutely terrible breaking really low so it hurts), and water retention where my ankles and hands get swollen. So yes a few symptoms… not unbearable but not comfortable either. I wonder if my symptoms would improve if they gave me levo? Why are they not keen to give me the medication?

[greygoose in reply to Viio3]

Because doctors hate treating hypo. They know very little about it and feel out of their depth, from what I can gather. They put it off for as long as possible. Plus, they only tend to look at the TSH, because it's all they know about. They know next to nothing about the actual thyroid hormones, T4 and T3, they don't know how to dose and they don't understand how to interpret blood test results. Which is why forums like this exist, so that patients can learn about their disease and advocate for themselves.

I think your TSH would need to be at least over-range before she will contemplate treating, even with high antibodies and symptoms. They were taught in med school that the TSH tells them all they need to know - which is utterly preposterous, but what they learn in med school is sacred, and they rarely, if ever, question it.

[Viio3 in reply to greygoose]

Thank you so much. It is incredibly helpful. I have no idea what we would do without the groups like these. It is often such dark tunnel as one is left to just be without medication and without advice… are there any for tots that actually take thyroid patients seriously here in London so that I could see. I have tried private and they didn’t do much better just said let’s monitor, nhs the same, so I have no idea what to do but with symptoms showing clearly I could or should do something…. X

[greygoose in reply to Viio3]

I'm afraid I have no idea what there is in London, I don't lieve in the UK. But, doctors that do take thyroid seriously are very few and far between, I'm afriad, because they've been taught in med school that it's no big deal.

[Viio3 in reply to greygoose]

Thank you so much. I think you are right as they are just not that interested in it. I am thankful for this website and will read things and hopefully gain knowledge as to what is best. Thank you

[greygoose in reply to Viio3]

You're very welcome.

[1tuppence in reply to greygoose]

greygoose, could you help Viio3 with a link to the ThyroidUk request for their lists of helpful thyroid consultants/GP's, both private and NHS please? I would, but am not techie enough........ thank you in advance.

[greygoose in reply to 1tuppence]

Is this what you mean?

thyroiduk.org/help-and-supp...

[1tuppence in reply to greygoose]

Yes!!!!! Thank you so much. You're a star

[greygoose in reply to 1tuppence]

You're welcome.

[radd in reply to Viio3]

Viio3,

Hashimotos can be very much effected by our sex hormone levels, as in the first half of our menstrual cycle there is felt a much stronger immune response (ie higher inflammation, etc) whereas the second half calms the immune response.

We are most vulnerable when progesterone levels drop and prostaglandins kick in (aka PMT) and this is when TPOAb’s are likely to increase. Therefore, once our sex hormone levels start to drop using HRT to replace deficiencies will help regulate the immune system. Also adopting a gluten free diet and supplementing selenium, Vit D and fish oils (anything known to calm an over active immune system) can help delay the onset of Hashi. Some people find LDN helpful in reducing antibody levels, and adaptogens can help improve thyroid function before we start medicating.

The levels of both antibodies and thyroid hormone is important but equally important is how those antibodies are negatively effecting the thyroid hormones you have. Auto-antibodies (as in Hashi) are unwanted inflammation and can be very destructive, even stopping thyroid hormones from working effectively (medicated or own).

Hair loss & dry skin are classic hypo symptoms. Have you read The Root Cause by Isabella Wentz to understand more of Hashi's insidious workings?

[Pearlteapot]

Isabella Wentz suggests that there is relationship between menopause/HRT and Hashimoto. I'm not sure that I'm able to explain this correctly so please read the link or her book. She suggests that excess estrogen results in an increase in thryoglobulin antibodies which prevent T3 from binding. The estrogen loading from HRT may not be a good thing at all from the thryoid point of view. thyroidpharmacist.com/artic... There is also a long section in her book 'The Root cause of Hashimotos' on the effect of estrogen.

If her thesis is right, then the HRT your doctor is giving you, rather than calming the thyroid situation down might make it much worse.

[Viio3 in reply to Pearlteapot]

Thank you so much. It is very helpful. I will have a look at her work. It’s so hard because there are so many with so many solutions but not all work…. And then there is an issue of who to trust.

[Viio3 in reply to Pearlteapot]

When looking at the symptoms of oestrogen dominance I have so many of those very interesting article. Will get the book and read. Have you got any more info? How do we know if we have oestrogen dominance? How to test for that? I have always had issues with progesterone low and low and low and had issues as a result to maintain the pregnancy (failed a fair few times too) … so dr tried to give me progesterone pills but made me feel awful, then I took them vaginally again felt terrible and now I am getting them in the form of pill femostone combined oastrigen and progesterone which is ok.

[Pearlteapot in reply to Viio3]

I'm not sure. There are a lot of articles on the web about estrogen dominance and its connection with hypothyroidism and/or Hashimotos. One just has to try to make sense of it and decide what to trust. Not easy I know. I looked for a test but couldn't find one as all the estrogen tests I could find related to people measuring their fertility - which tests something else so far I can understand.

I also had many of the symptoms. After years on an estrogen sequential HRT I had uterine polyps removed on three separate occasions and was told I had fibroids and that this is normal. No one suggested stopping the HRT. Then after changing doctor I was changed to femoston conti because it is a better balance of estrogen and progesterone. I think you are now on that? I've just stopped it because I want to see if I feel better, less swollen and perhaps need less levothyroxine without lots of extra estrogen swilling about in my body.

Just trying to figure these things out myself. Sorry that I can't be more help. I just wanted you to consider this issue before going ahead with more HRT.

[Viio3 in reply to Pearlteapot]

Thank you. I am on femostone conti and since starting all my other symptoms of hot flushes etc have gone. I have tried body identical natural etc nothing worked and this is first time I feel reasonably ok. She also gave me some propranolol which has reduced my migraine attacks 95% which is amazing. However I still have this awful thyroid issue. I just wonder is it possible to feel ok ever again with it. Hope so 😬 thanks for your help.

[1tuppence]

Viio3 have you contacted ThyroidUk and asked them to send you their list of helpful to thyroid patient medics? Perhaps an admin could add the link please? Otherwise type a new question/post?

[Viio3 in reply to 1tuppence]

Thank you no I didn’t know about that. Yes please if that is a possibility I would love to be able to find someone that knows and understands it and can help of course thank you.

[1tuppence in reply to Viio3]

Go to ThyroidUK...... there will be a link somewhere on here......and ask for their list? Perhaps reply to greygoose above, and ask if she could help you with this? She's a very helpful person, so am pretty sure she will.

[SeasideSusie Remembering in reply to Viio3]

Email for list of thyroid friendly endos, NHS and private:

[e-mail]

[Viio3 in reply to SeasideSusie]

Thank you have done that now.

[1tuppence in reply to SeasideSusie]

Thank you SeasideSusie

[SlowDragon Administrator]

Looking at previous post, all your vitamin levels are good

Is that because you take vitamin supplements or are they naturally at good levels

[Viio3 in reply to SlowDragon]

Hmm not sure I do take vitamins from time to time but then I have a few months of nothing. My vit D was low two years ago so I took that for a while and now I just take it on and off. Vitamin c I take every time there are bugs around but I don’t take any bit b.

[SlowDragon Administrator in reply to Viio3]

Good vitamin levels suggests your gut not really being affected by having high thyroid antibodies

[Viio3 in reply to SlowDragon]

Thank you that’s interesting. My diet is very good and healthy so could contribute to that… I guess.