So confused!

[Sabu1]

For years my thyroid has been over then under and never levels for very long. I am a 52 year old teacher who is currently signed off work with stress. I have this week been told to drop my medication to 125mg from 150. This is an ongoing scenario. Doc says im depressed/stressed and i ask if it could be my thyroid and he ignores my question. I have asked several times to see an endocrinologist and he says this is not necessary. I feel terrible and am bsck in work next week ad i feel awful not being in. I know im not well enough to return as my anxiety etc is through the roof. Just needed to send this message as i feel like im losing control.

[SeasideSusie Remembering]

Sabu1

If you are swinging from over to under, presumably your blood tests show this and you are experiencing symptoms, then it sounds very much like you have autoimmune thyroiditis aka Hashimoto's.

Have you had thyroid antibodies checked? There are 2 types - Thyroid Peroxidase (TPO) and Thyroglobulin (TG). The NHS rarely does TPO and almost never does TG. If you've had TPO tested and they came back negative, it's essenial to test TG as you can be negative for TPO but positive for TG.

If not already tested then you need to ask your GP to do them, although he may only be able to get TPO done, I think an endo needs to request TG. Or you could do what hundreds of us here do and that is do a private home test which can be done by fingerprick or venous blood draw.

Also, for thyroid hormone to work properly it's essential that nutrient levels are optimal, so testing the following is also recommended.

Vit D

B12

Folate

Ferritin

[greygoose]

What exactly does your doctor test? Is he just dosing by the TSH? Do you always have your blood tests early in the morning and fasting? Do you have a copy of your latest bloods?

So many questions, but all the little details count.

[Judithdalston]

Can sympathise with that Sabu1, was teaching in very stressful situation when diagnosed hypothyroid and just couldn't get Thyroid 'meds' right to control any symptoms mainly exhaustion at that time, and had to give up job. Have you any results ideally TSH, FT4, FT3, plus Vit D, B12, folate and ferritin, and thyroid autoimmune antibodies? Might be worth getting done privately thru likes of Medichecks if you want full and quick results. You will find the forum members probably better able to treat you than doctors who believe TSH is the only important Thyroid number, and if you aren't feeling any better then you must be 'mental'.

[shaws Administrator]

It sounds as if your doctor 'treats' the TSH only, but forgets that this is from the pituitary gland and not the thyroid gland. It rises when thyroid gland is failing and once we take levothyroxine the aim is a TSH of around 1 or lower. Some feel better when it's supressed and we don't get heart or bone problems as many professionals scare us into believing. Many doctors believe that somewhere in the range is fine, so that could be your GP also.

The worst thing they can do is adjust meds according to the TSH. We will never recover. I agree with Judithdalston that most members are far more knowledgeable than an Endocrinologist or GP. One of our deceased doctors was a one-man advocate against the whole of the endocrinology as he stated often that they were not diagnosing/treating in deference to a TSH result and ignoring all clinical symptoms. He said we were in a 'parlous situation' and he was right as there's so many on the forum looking for answers. They didn't like him as he was a Virologist and thought they knew better than a Researcher/scientist and Specialist.

[SlowDragon Administrator]

First thing is, do you have any actual blood test results?

if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, (EU rules changed after May 25th 2018)

How much Levothyroxine are you currently taking?

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also essential to test vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you have a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you do your tests?

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

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

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 money off offers.

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

About 90% of all 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 very important to get TPO and TG thyroid antibodies tested at least once .