Which one is best?

[Pottypotter]

I want to speak to someone about my thyroid levels and thought I would look online to see whats out there.....There is a choice: The British Thyroid foundation, The British thyroid association or Thyroid UK.

Which one do I choose???

[Marz]

This forum ...

[Pottypotter in reply to Marz]

Are there professionals in Thyroid function and medication on this forum or are we all sufferers who talk to each other ? I would like to speak to a Thyroid specialist but not sure how to find one...

[Marz in reply to Pottypotter]

There are over 103.000 members here. Many are experts due to years of study/research. From being a member here for over 8 years it is obvious the lack of understanding and Thyroid knowledge within the medical profession is sadly lacking. Reading the posts will soon have you learning more !

[Pottypotter in reply to Marz]

Thanks for the info. I was only diagnosed earlier this year and am already beginning to understand how the NHS system works as far as blood tests, diagnosis and treatment are concerned. As you point out, general practitioners are sadly lacking in knowledge and understanding.......its pretty depressing. My TSH levels are still not within the 'normal' range and I have been feeling dreadful for the past month. I want to increase my dose of levothyroxine and am waiting for a call from the doctor this morning to discus this. The fact that I have been left to figure all this out by myself, hours of waiting and queues at the doctors and on the phone have left me feeling so worried...what if he doesnt agree to me upping my dose, what if I am left feeling like sh** ? Will I have to beg him to let me try upping the does so I can see how I feel? It all seems so random and vague.

[Marz in reply to Pottypotter]

If you have your results do post them so members can help you build a picture to help your discussion with your GP.

Have you had your vitamins and minerals tested ? B12 - Folate - Ferritin - VitD ? All need to be optimal for Thyroid hormones to work well.

[Pottypotter in reply to Marz]

I had a health screen blood test done last week and the results are in but they dont mean much to me and it didnt included vitamin and mineral levels.....however at the first diagnosis my first TSH level origionally was 39mui/L then I was put onto 25mg of levothyroxine and it came down to 37mui/L then they upped the dose to 75mgs which was working well for a few months until about 6 weeks ago when I started to feel awful again. My blood test came back this week as 17 mui/L so its still not quite right. My question is can I up the dosage of levo myself to 100mgs and see how I feel, or must I wait for the doctors permission to do this even though the doctors are not experts either....?

[SeasideSusie Remembering in reply to Pottypotter]

Pottypotter

My blood test came back this week as 17 mui/L so its still not quite right. My question is can I up the dosage of levo myself to 100mgs and see how I feel, or must I wait for the doctors permission to do this even though the doctors are not experts either....?

With a TSH of 17 your GP should have immediately contacted you (or arranged for someone else in the surgery to do so) and increased your Levo by 25mcg immediately, then you retest in 6 weeks time to check your level and increase dose if necessary. This should be done every 6 weeks until your TSH is in range and at a level where you feel well.

Refer to the information I have just given in my other post below.

If you raise your dose yourself you will run out of tablets before your next prescription is due then you will have to explain to your GP why. If you have not been contacted about an increase in dose then I would ring the surgery and ask to speak to the GP or make an urgent appointment to discuss this.

The aim of a hypo patient generally, when on Levo, is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

[SeasideSusie Remembering in reply to SeasideSusie]

Pottypotter

Just a thought, your TSH doesn't seem to be responding very quickly. Are you taking your Levo correctly?

We should take Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

Also, we need optimal nutrient levels for thyroid hormone to work properly so we should test Vit D, B12, Folate and Ferritin.

Do you have any absorption problems - coeliac, etc?

[Pottypotter in reply to SeasideSusie]

Hi

thanks for the quick response. The doctor just called me back as requested and said I could increase the dose up to 100mgs. Interestingly looking back at all my blood tests this year my TSH had come right down to 1.1 way back in April but since then have crept back up to 17, hence me feeling crap again. Is this normal to weave up and down on TSH levels?

The doctor said they were 'very busy' and couldnt wait to get off the phone to me, seemed like my call was an inconvenience to her and that what I was experiencing was not that important and I should make an appointment with a doctor to discuss this in more detail.......Iit was only when I managed to point out that I felt awful she suggested I up the dose to 100mgs, like an after thought!

If I hadnt gone to all the trouble and hounded the surgery to give me that doctors call today I would be none the wiser. Its a frightening thought...

[SeasideSusie Remembering in reply to Pottypotter]

Interestingly looking back at all my blood tests this year my TSH had come right down to 1.1 way back in April but since then have crept back up to 17,

Ah, then this can suggest autoimmune thyroid disease aka Hashimoto's, which is where the immune system attacks the thyroid and gradually destroys it. Fluctuations in test results and symptoms can occur during these attacks and you can swing from "hypo" to "hyper" and back again.

You should ask your GP to test thyroid antibodies. Likely only be able to get Thyroid Peroxidase done at GP level, there is another one - Thyroglobulin antibodies - but that is generally only done via an endocrinologist. You can be negative for Thyroid Peroxidase but positive for Thyroglobulin.

Info about Hashi's:

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies, so it's now essential to test Vit D, B12, Folate and ferritin.

[SeasideSusie Remembering in reply to Pottypotter]

Pottypotter

If he doesn't agree with increasing your dose, there is information available to support your request.

If your TSH is over 2, this will be helpful:

You can refer your GP to NHS Leeds Teaching Hospitals who say

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

If your TSH is below 2 then this will be helpful:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

As T3 is the active hormone which every cell in our bodies need, it's essential to test FT3 as well as FT4 and TSH; however, it's very unfortunate that doctors aren't taught about, nor understand the importance of T3.

The new guidelines for thyroid treatment were published recently and this is from them

nice.org.uk/guidance/ng145/...

1.4 Follow-up and monitoring of primary hypothyroidism

1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

[Pottypotter in reply to SeasideSusie]

Thank you so much for your time and concern, I REALLY appreciate it. I have private medical insurance and will ask my GP to be referred to a specialist here. Thats if I can ever get a referral letter that is!!

[Marz in reply to Pottypotter]

Ooops - forgot to mention there is a Research Analyst here - diogenes. He posts the Thyroid Research he is involved in.

[DippyDame]

You have arrived!

[asiatic]

Why not try them all . I have. I would also add in the Elaine Moore forum which along with this forum are now my " go to " when I need advice

[cjrsquared]

Most members on this forum are fellow sufferers, but they are very knowledgeable. Sadly it is very difficult to find an endocrinologist who is an expert in the thyroid, most are diabetes experts with a ‘special interest’. There is also the complication that there is a wide diversity in thyroid management with so called experts supporting different treatment regimes. There is also the fact that many thyroid patients feel unwell on standard therapy and then resort to self help and forums.

It is frustrating but the best recourse is to start reading and learning so that you can then debate with your physician and if lucky find a way forward. Good luck

[LuluCops]

I absolutely agree with Marz. I was very ill before I found this forum. I was seriously under medicated and my fibro and Addisons Disease was far from being under control!

After reading posts, and finally getting the courage up to ask questions and post my results, I started following the advice given by the extremely knowledgeable and experienced folk on here and now three months down the line I haven’t felt this well in YEARS! Even my fibro pain is under control and I’ve been able to come off the morphine that I’ve had to rely on for months! I don’t feel so tired anymore either!!

I’ve come to learn that the only expert on your health is you! If you have thyroid or adrenal issues, you have to be your own advocate and with lots and lots of research you’ll become your own expert too. It’s taken me 3 years of being so poorly that there were days I slept 22 hours straight, and when my adrenals were giving out I slept for days at a time, could barely lift my head off my pillow let alone be a mum to my kids! I couldn’t walk far before crippling pain made me stop and sit down. Admittedly I’m still not able to walk far and I do have to use a scooter for shopping etc but I have spinal problems, what I mean is that I don’t have to rely on morphine anymore for it, I’m better able to cope with the pain because I’m not in so much pain everywhere else anymore.

I’m convinced it’s because I have my vitamin levels optimal or almost optimal, I’m sorting the dose out for my thyroid and I’m almost there with that, which means in total I can bring my hydrocortisone down and get my AD under control. All thanks to this forum- it’s been an absolute lifeline!!

Sorry to ramble- I have a bad habit of doing that, I just wanted to give you an example of how this forum is so much better than most if not any medical professional that you may come across

Shelley x

[Marz in reply to LuluCops]

Great post - so glad you are making good progress - must be such a great feeling 🥰

[LuluCops in reply to Marz]

It is Marz, didn’t think it would be possible after so many years of being ill. I feel like I’m finally getting my life back 🥰

[Marz in reply to LuluCops]

You are doing really well and I am sure your positive story will help others

[LuluCops in reply to Marz]

Thank you 😊

[DippyDame in reply to LuluCops]

I ramble too! What an encouraging post for a new member to read, good to hear you are doing well.

I totally agree...this forum is a lifesaver

Take care

DD

[LuluCops in reply to DippyDame]

Thank you DD

[SlowDragon Administrator]

Good that GP has increased dose Levothyroxine to 100mcg (but completely wrong that you needed to chase this up yourself)

You will need bloods retested 6-8 weeks after each dose increase in Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after

Very important to remember to take Levothyroxine everyday...getting a weekly pill dispenser is a very good idea

Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find 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 or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

No other medication at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

For full Thyroid evaluation you need 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

Sounds like you probably do ....as a TSH fluctuating

Ask GP to test vitamin levels and thyroid antibodies....or get full Thyroid and vitamin testing privately

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

We see many Hashimoto's patients who only have raised TG antibodies and they struggle to get diagnosed

Thyroid levels should be retested 6-8 weeks after you start on 100mcg Levothyroxine

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

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 or all vitamins

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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 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_...

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels