No help from GP: Hi all, As previously mentioned... - Thyroid UK

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No help from GP

Lotsothyroidqustions profile image

Hi all,

As previously mentioned I am currently on 75mcg Levothyroxine (Teva brand) with Hashimotos. I am very careful with taking the Levo properly and in general live a pretty healthy lifestyle. For the last couple of months my symptoms have really ramped up, those being:

- joint & muscle pain (hands and wrists especially)

- extreme fatigue

- thinning hair

- peeling nails

- weight gain

- cold intolerance

My latest test results are attached - they would only test TSH and free T4. My test was at around 8.30am, before taking Levo or eating, but I forgot and had a coffee before.

I had a call to discuss with the GP this morning and explained the symptoms, told him about the NICE guidelines, said I would like to try to get my TSH level to around 1 or below and asked for a dosage increase to 100mcg Levo. He said….

”No.” He said my numbers were normal and they had never been around 1. I said yes and I have never felt 100% but felt better when the TSH was lower. He asked what else I thought might be causing the symptoms.

I said, I don’t think anything else is causing them and went through the guidelines again. He said he would contact an endocrine specialist via email and ask them what they thought and that I should hear back within a week or two and asked whether I thought that was reasonable.

I said I don’t feel well and would like to be on a path towards feeling better sooner than that and I strongly feel that my TSH should be lower and that would help the symptoms. He said he will contact the specialist and get back to me.

That was how it was left. How to I feel now? In addition to the other symptoms above I now feel dejected, hopeless and disempowered. 😔 I really do not know what to do other than to wait and see what the specialist says, which might be yes to the increase, but might also be no.

Was my request unreasonable? Should I just wait for a response from the specialist and hope for the best? Is the doctor right that I’m fine? Any advice would be much appreciated.

Thanks,

(Still) Lotsofthyroidquestions x

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Lotsothyroidqustions
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12 Replies
SlowDragon profile image
SlowDragonAdministrator

You are Absolutely correct

Suggest you email or print out guidelines and get copies to your GP

TSH should be under 2 as an absolute maximum when on levothyroxine 

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

Which brand of levothyroxine are you currently taking

Do you always get same brand at each prescription

Suggest you request/politely inform GP you are increasing dose levothyroxine to 75mcg and 100mcg alternate days

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D, folate, ferritin and B12 levels tested recently

Please add results and ranges

What vitamin supplements are you currently taking

As you have Hashimoto’s have you had coeliac blood test done

Are you now on strictly gluten free diet and/or dairy free diet

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here 

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Buzcat profile image
Buzcat

try changing your brand

helvella profile image
helvellaAdministrator in reply toBuzcat

Making the seemingly reasonable assumption that Lotsothyroidqustions is prescribed a single 75 microgram tablet, changing brand is not possible.

It would be necessary to get the prescription re-written to 50 + 25 (or 3 * 25). Which, given current antagonism with GP is unlikely to be an attractive proposition.

However, I agree that Teva might not suit Lotsothyroidqustions.

Lotsothyroidqustions profile image
Lotsothyroidqustions in reply tohelvella

That’s interesting, is the brand generally linked with the GP practice or the pharmacy? I had another brand to start but then they changed it to Teva without any explanation.

helvella profile image
helvellaAdministrator in reply toLotsothyroidqustions

In general, it is a combination of the pharmacy and chance!

But in the specific case of 75 micrograms it is simply that the only such product licensed in the UK is Teva - so it depends on the prescription and how it is written.

Personally, I have requested my GP prescribe Aristo levothyroxine (also branded Vencamil) as it is free of lactose and mannitol but for my 25 microgram, I'll accept Wockhardt despite lactose - as there is no lactose-free product in the UK.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.

The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.

helvella.blogspot.com/p/hel...

Lotsothyroidqustions profile image
Lotsothyroidqustions in reply tohelvella

Thank you helvella ! Believe it or not, this evening I have received a text from the GO saying he has read through the NICE guidelines (after I quoted them to him this morning) and he agreed that my dose needed to be increased to 100mcg and I will be retested in 4-6 weeks. The 100mcg is Mercury Pharma brand so it will be interesting to see whether that makes a difference! I am really interested to have a look at your blog!

Jaydee1507 profile image
Jaydee1507Administrator

It is very disheartening when your GP is rigid in their beliefs and seems not to be listening to you. This is all too common with GPs and sometimes even Endo's and it really shouldn't be like this.

Being a hypo patient can often feel like you're hitting your head against a brick wall but you need to make a come back and not fall at the first hurdle.

There is some hope in that your GP is contacting an Endo for advice, and that may well go in your favour. If not then leave it a short time and try again with a different more helpful GP at the same practice. Keep asking and seeing different doctors until you get the right answer.

Lotsothyroidqustions profile image
Lotsothyroidqustions in reply toJaydee1507

Thank you Jaydee1507 , the empathy and hope is much appreciated. It’s so nice to have a place where people understand. I will keep my fingers crossed that the endo will help but will keep trying if not x

SlowDragon profile image
SlowDragonAdministrator

At moment suggest you push for dose increase

Once on 100mcg there’s wide choice of brands of levothyroxine

If currently getting 75mcg tablet it will be Teva as Teva is only brand that makes 75mcg tablets

So if Teva is causing an issue ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, 

 Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free. But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free. 

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

 

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands 

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

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. 

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Lotsothyroidqustions profile image
Lotsothyroidqustions in reply toSlowDragon

Thank you so much SlowDragon for all your help and the wealth of information, it is all so helpful! Believe it or not, this evening I have received a text from the GO saying he has read through the NICE guidelines (after I quoted them to him this morning) and he agreed that my dose needed to be increased to 100mcg and I will be retested in 4-6 weeks. The 100mcg is Mercury Pharma brand so it will be interesting to see whether that makes a difference!

SlowDragon profile image
SlowDragonAdministrator in reply toLotsothyroidqustions

Result 👏👏👏👏👏

Well done

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