TSH Level increasing

[Nicki24110]

Well, my TSH Level has gone up to 5.97 and gp still won’t start treatment. What should I do?

[Desperate-Suzi]

Hi Nicky mine was just above range (like yours by sound of it) and luckily I got a locumb GP who was like a breath of fresh air and she put me on thyroxine. Could try and see another GP!!

I’m sure people on here will be able to advise you they’re very knowledgable!

Good luck x

[Nicki24110 in reply to Desperate-Suzi]

Thanks for your reply. A few months ago it was just under 5 and she told me that she would start treatment if it went above 5.5, now she says that she won’t treat until it is 10. I’m so frustrated, the other gps are sticking with her on this.

[Judithdalston]

The Gp is probably waiting till It's 10, though in other countries your are hypothyroid when it's in the 3s. Have you any symptoms, is this the reason your saw Gp in first place? You could keep going back to doctor till he/she gets so fed up you will be able to convince him/ her to give you a trial of 50 mcg levothyroxin. Did he/she test for thyroid autoimmune antibodies? If you really think you are getting nowhere with the GP you could either ask to see an endocrinologist ( ideally one sympathetic to thyroid problems and not a diabetic specialist- can get list from Thyroid Uk), or try your own private blood tests and work for eg improving your essential Vit D, B12, folate and ferritin levels to optimum upper ranges for starters.

[Nicki24110 in reply to Judithdalston]

My antibodies are high, I first got checked out in jan 2017 and my symptoms have been present for a long time.

[Peanut31 in reply to Nicki24110]

Hi Nicki24110

It doesn’t surprise that they will not treat you, despite you feeling ill.

I was seeing a private Endocrinologist (was on the list provided here), anyway he diagnosed me with Hashimoto’s said no thyroid medication would help.

I reported him on here and I believe his name has been removed, I now believe it was because my TSH was not 10 or over, but, he never told me that.

Cut a long story short I got worse, went to my GP surgery, saw an awful GP, she told me it was anxiety and as my Endocrinologist wouldn’t prescribe anything, why would see.

I left thinking this was how my life was going to be.

Few months later and like a zombie, went back to my surgery, saw my allocated GP, full thyroid taken and within a few days they phoned me my TSH was 12.2.

I started treatment immediately.

As Judithdalston have mentioned, you may be able to find a more sympathetic GP or Endocrinologist, or the other option is to self medicate with NDT.

Best wishes

Peanut31

[Judithdalston in reply to Nicki24110]

What are your symptoms? You now about some members try gluten free, even dairy free, to help with autoimmune antibodies/ Hashimoto's- characterised by poor gut absorption and low mineral/ vitamin levels. Might be worth getting Vit D, B12, folate and ferritin tested. Many of us do private testing thru Medichecks or Blue Horizon; post results here and you'd get more support ( probably better than your Gp's or many endocrinologists).

[SlowDragon Administrator in reply to Nicki24110]

As you have high antibodies and above range TSH and symptoms, NHS does suggest trial of Levothyroxine should be tried.

cks.nice.org.uk/hypothyroid...

If TSH is between 4 and 10 mU/L and FT4 is within the normal range

In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.

Also

gp-update.co.uk/files/docs/...

Essential to test vitamin D, folate, ferritin and B12 and supplement if low

As you have raised antibodies are you on strictly gluten free diet or tried it?

[Mary-intussuception in reply to Nicki24110]

Who tested Antibodies? GP or Endocrinologist?

I would write a list of ALL your symptoms to take to GP. Ask for an urgent referal to an Endocrinologist . Ask for an Ultrasound scan of your Thyroid, while waiting for Endo appointment to come through.

With raised TPO (Thyroid Peroxidase Antibodies ) and out of range TFTs you should have been given a diagnosis of Hashimoto's Autoimmune Thyroiditis and Hypothyroidism and either had treatment started or referal to Endo.

If not ask for a diagnosis.

Make sure you have Adrenals checked out BEFORE starting Levothyroxine.

Do you check your temperature? If not check it first thing every morning and add to your list of symptoms if low.

Did you just have TSH and Antibodies tested?

[Desperate-Suzi in reply to Mary-intussuception]

Hi Mary

I was wondering why you suggested having adrenals checked before starting Levo.

I am concerned because I think I may have an arsenal issue and take thyroxine 100mg.

I’m just waiting for my MRI results which was done to check possibility of a prolactinoma on my pituitary.

Kind regards Vicky

[Desperate-Suzi in reply to Desperate-Suzi]

Not arsenal 😂 adrenal !!! Sorry !!

[Mary-intussuception in reply to Desperate-Suzi]

Hi Vicky

I just know that mine were and as I understand it's best that any Adrenal issue is resolved / treated before starting Levothyroxine. So I'm not sure how they're tested /treated once on Levo.

Have a good read of the Levothyroxine patient information leaflet, there is a mention on there. Can't read mine just now as I'm sitting down in Tescos resting before trip home.

Hope you don't have a Prolactinoma on your Pituitary - but I don't know much about that or how it effects things/ treatments. But I would definitely ask your Consultant about your Adrenals, make a list of any concerns, questions.

I had thirst all the time and had to carry water with me everywhere (still do, sometimes) GP thought of Diabetes but not Thyroiditis. I believe it to be a symptom of Hypothyroidism but apparently it's also a symptom of Adrenals problem. However mine were OK and the Endocrinologist phoned me when he got results to say OK to start my Levo.

Before formal diagnosis, I spoke to the lovely woman on a Thyroid helpline (who simply LISTENED to me tell all my symptoms) she told me I have Hashimoto's she also told me to ask for an Ultrasound scan of my Thyroid and also said the Endocrinologist would probably check my Adrenals first due to some of my symptoms. She was so right!

My GP prescribed me the 50mcg start dose of Levothyroxine after he got the U/S scan result and refered me to the Endo. But I decided to wait till I saw Endo, and he arranged the Short Synacthen Test urgently.

xx Mary

[shaws Administrator in reply to Nicki24110]

If antibodies are high and not being prescribed. email Dionne at

[e-mail]

and ask for a copy of Dr Toft's Pulse online article. He is also physician to the Queen when in Scotland. In it highlight the part that states that if antibodies are present we should be prescribed. Going gluten-free can help reduce the antibodies and they attack the gland and wax and wane until hypo.

Tick off your symptoms:

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

[shaws Administrator]

He/she is sticking to the stupid guidelines, i.e. 'not to prescribe until TSH is 10'. Ignoring the fact that in other countries we're diagnosed when it is above 3+ with symptoms.

If in the UK, symptoms are completely ignored, no matter how disabling they are.

That's why many source their own thyroid hormones and treat themselves to 'good health' instead of remaining with disabling symptoms. They haven't a clue at all how hypo affects people. Considering that T3 is the only active thyroid hormone it is never or rarely checked. It puzzles me because T4 is a storage (or inactive) hormone and it has to convert to T3. T3 being the only active thyroid hormone which runs our whole metabolism.

Did you have the earliest possible test? Fasting (you can drink water)? This can make the difference between being diagnosed or not. The TSH is highest early a.m. and drops throughout the day.

[Hashihouseman]

What are your free T3 and free t4 levels. The TSH alone is almost useless unless it is stupid high or stupid low. If your TSH is within 3 of the median for healthy thyroid population (between 1&2) it could still be normal for you or reflection of normal circadian rythyms fluctuations unless you have notably low ft4 / ft3, if the free thyroid hormones aren’t too far out then higher tsh could be a sign of sub-clinical or transient hypothyroidism / thyroiditis and needs to be monitored but not necessarily treated with thyroxine. Once you start treatment your body then has something else to adjust to and you may disturb its effort to repair and self regulate. If your free T3 and t4 are significantly low as well then the case for withholding treatment is sheer bloody mindedness or ignorance or incompetence but in the face of insufficient blood test data and making a clinical decision without at least ft3 ft4 and tsh, that failing alone is incompetence.