Help for sister: I suffer myself from... - Thyroid UK

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Help for sister

Toto88 profile image
7 Replies

I suffer myself from hypothyroidism & know how difficult it is to be heard by NHS GPS !

My sisters TSH reading has come back as 5.22 mu/L (Range 0.3-5.6)) FT4 10.6 pmol/L (6.3-14.0) She has been told countless times she maybe borderline hypothyroid but her GP will not try her on a small dose of levo ! She is also anaemic all the time & they are constantly calling her in to test for it - she takes ferrous sulphate 200mg every other day but this has been going on years & I believe she should be having injections if they cannot get this under control ! She has been sent to see a gastroenterologist 3 times because they wanted to see if the lining of her bowel was bleeding ! She has a stomach hiatus hernia & I told her myself that using PPI inhibitors every day can cause anaemia but neither her GP or the specialist told her this ! She has spoon shaped nails, tired all the time sore throat, thinning hair & would anyone agree that the result of her TSH alone is showing that her thyroid is not wrkg properly! I have suggested she gets private bloods done but if anyone can advise that would be of great help xx thanking you all x She is always low of V D which she also takes regularly x

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LivingWithHT profile image
LivingWithHT

She does not have borderline hypothyroidism, she IS suffering from hypothyroidism and a very obvious case of one, too.

A lot of the symptoms you describe her having is likely a result of low stomach acid - a very common symptom of hypothyroidism. There are several remedies that may help her in this case: taking a supplement containing both Betaine HCL & Pepsin (has to have both) at least 30 minutes before every meal or drinking a mixture of Apple Cider Vinegar (with ‘the mother’ written on label) and lemon juice before every meal. Those two methods help increase stomach acid levels and will improve digestion and reduce severe indigestion issues.

Anemia is also another common symptom of hypothyroidism and from how you’ve described your sister’s case, it seems she may have the MTFHR gene mutation many hypothyroid people suffer from which means her body is unable to properly absorb and/or utilize the iron from ferritin or iron supplements and unable to turn folic acid into folate. Signs to indicate this can be high iron levels but low ferritin and folate levels. The best supplements to remedy this is usually Ferritin (NOT iron or ferrous sulphate) and Folate (from methyl-folate and NOT folic acid.)

For low vitamin D, try softgels or an oral spray from BetterYou.

She definitely needs thyroid medication and if the GPs you have been to refuse to help then try another or go to a private one (if you are able to.) Expensive, I know, but your sister is seriously ill and needs medical care ASAP.

Otherwise, you can try to self medicate by finding a way to order meds online without a prescription from sites based in countries that don’t require it for levothyroxine. A lot of people on this forum can help you with that.

**ACV and lemon juice should be diluted mixed in water.

SlowDragon profile image
SlowDragonAdministrator

First step is to get full thyroid and vitamin testing

For full Thyroid evaluation she needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test B12, folate and magnesium vitamin levels and thyroid antibodies

Long term use of PPI causes vitamin deficiencies

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

She may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Vitamin D needs retesting twice yearly. Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

mandyjane profile image
mandyjane

She is clearly hypothyroid with stomach issues re poor absorption of nutrician as is often common with being hypo. I have come to the conclusion that when people go untreated for a long time, the body stops converting T4 to T3 very well. The body tries to reserve as much thyroid homone as possible for the essential organs and in other areas of the body eg muscle mass, reproductive organs, the body become resistant by limiting the thyroid hormone from changing from its store to its active form. Just my own hypothesis based on experince here. At one time I would have said for her to get some levo and give it a try but for many people this delays getting well sometimes for a long time. So I tend to suggest that people who have been left untreated for a long time go straight to having some T3 but that probably would mean self treating and it seems unlikely she is ready for that yet. Another option is something like metavive which she can buy in Uk to see if that helps. The proton pump inhibiters are the last thing she needs. I found I used to have awful indigestion before starting thyroid hormones. Betaine, cider vinegar can help as can vitamin c fissy tablets. I am not sure why they keep testing ferretin and why her iron is taken every other day instead of everyday.Vitmain C can help with the bowel issues cause by taking iron or being hypothyroid. You just need to up the dose until it becomes easy to go. I despair of the medical profession. It sounds like she need B12 as well as vitamin d, these can be purchased as patches or oral sprays that do not need to be absorbed in the tummy (betterforyou B12 with K2 good). She might need B12 injections. I should imagine she is getting very little if any benefit from food or supplements swallowed. Maybe you could suggest she comes on here to say hello and get to know us a bit. A lot of people with brain fog are unable to really realise how utterly useless doctors are being.

greygoose profile image
greygoose

You are full-blown hypo when your TSH reaches 3. But in the UK, they insist that your TSH reaches 10 before they will diagnose. This has nothing to do with patient welfare, they don't give a flying whatsit about that, it's about money. It has nothing to do with medical science or best practice, either. They are simply saving money by leaving patients to suffer for as long as possible. And if her doctor is not willing to listen then I honestly don't know what she can do about it.

LivingWithHT profile image
LivingWithHT in reply to greygoose

Sadly, it’s always about the money. I can’t believe they wait until a TSH of 10 to take action, that’s literally insane and intentional medical negligence.

greygoose profile image
greygoose in reply to LivingWithHT

Yup, I agree with you.

Tigerzzz profile image
Tigerzzz

Buy the book titled, 'Solved the Riddle of Illness' Langer. It saved my life.

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