Hashimoto’s Dr’s Reply - help needed please

[D911]

Bloods above - is anyone able to help me with a response to this letter please? I have asked for my levo to be put back up to 150 and they have refused - I have previously posted that I regularly don’t get meds I can take, brands are changed regularly - they often give me meds I have reactions to so I never get a full dose, they have reduced my meds because of my TSH reading - I take T3 and T4.

Thank you

Dear …………

Thank you for your email of 17 June regarding the ongoing discussion about the management of your thyroid conditions. We are very sorry to hear of your concerns you raise.

Please accept our apologies for the delay in responding to you. We felt ti was important to take the time to review your care with clinical input from myself and to set out the practice position clearly for you.

We are sorry that we have not been able to reach a shared plan for your thyroid management. We can see from your clinical record that both Dr ….. and Dr …… have been involved in discussion with you and shared the NICE guidelines for the assessment and management of Thyroid disease.

Clinically we believe the evidence concludes that TSH is an appropriate measuring tool for those with hypothyroidism caused by Hashimoto's and that TSH is indeed helpful in those on Levothyroxine.

In terms of the best approach to monitoring someone on thyroid treatment we would agree with the NICE guidelines that this is not T3 and T4. This simply reflects a snapshot of the day's level and not the longer term measure that is provided by the monitoring of TSH.

TSH is helpful as ti tells us how much thyroid hormone the body thinks it is getting. tI is important to note that the brain cannot distinguish between the hormone produced by the body's thyroid gland and that provided by the thyroxine replacement tablets. If the TSH is high this means that the brain is trying to stimulate the thyroid gland to work harder which is a response to low levels. The reverse situation is also true, where the TSH level is undetectably low this shows that the brain has recognised that there is an over supply of thyroid hormone and is therefore trying to switch off production.

As Dr ……. explained ni his message to you on 1th June, having too much thyroid hormone ni the system over the long term increases the risk of bone thinning and heart failure. It is for this reason that we are unwilling to prescribe a dose of thyroxine which lowers your TSH down into the undetectable range as this is not safe longer term.

Of course, we do appreciate and agree with you that symptom control is an important measure of whether you have sufficient thyroid hormone. Hence, we do not have a set TSH target, most patients feel at their best when their TSH is running ni the bottom half of the normal range.

Ihope that from this review and explanation you will understand why we are unable to increase your thyroid dose at the moment. fI you have not been able to source the preferred brands of levothyroxine then we would suggest that following a period of 6 weeks of consistently taking the medication we then repeat your blood tests and review the results with you.

We do understand that our position is not fully in accordance with your request, however we hope that by laying out the clinical rationale and the potential risks involved will reassure you that we have your best interests in mind in deciding on clinical treatments. fI you would like a further opinion on this then we would be happy to refer you to a thyroid specialist for further discussion and advice.

Iwould like to thank you for taking the time to raise your concerns with us and give us the opportunity to review your care and explain our treatment approach.

We hope that you are satisfied with our response. However fi you remain dissatisfied you have the right to raise your complaint with the Parliamentary and NHS Ombudsman. Further information about how to contact them can be found on their web site at ombudsman.org.uk/

Yours sincerely

[jimh111]

It's really difficult for GPs because they get crap advice from endocrinologists and NICE guidelines (written by endocrinologists).Their reference to TSH giving better longer measurement is wrong because 1. TSH responds rapidly to changes in hormone levels (provided it has not been very high or low for some time) and 2. TSH fluctuates considerably during the day and during the menstrual cycle.

TSH does however reflect the combined action of fT3 and fT4. So, it is better in that respect - providing the pituitary is responding normally.

In your case your TSH is probably low because you are taking liothyronine in addition to you prescribed levothyroxine. Does the GP know about this or prescribe it? It then comes down to how much you need these higher hormone levels, balancing risks against getting better.

Regarding your problems with some brands of levothyroxine you could ask your GP to prescribe a specific brand by name. Most brands of levothyroxine are cheap so this shouldn't be a problem.

[D911 in reply to jimh111]

Yes they know I take T3 as they have been prescribing it for years……….

[TaraJR in reply to jimh111]

One query though -

What happens when you have no thyroid, so surely the HTP axis is broken? You probably take a pretty high dose of T4 and/or T3. Why would a TSH level still be important?

[helvella Administrator in reply to TaraJR]

The theory is that the hypothalamus and pituitary will continue to work just as in those without any thyroid issues.

But, of course, there is no thyroid tissue for the TSH to target. So it just gets released and remains in the bloodstream for a short while before being broken down/excreted. And, if anyone argues that TSH has any extra-thyroidal function, other than stimulating the thyroid, that function could be expected to continue. Other than such possible functions, the TSH level is only a proxy for thyroid hormone levels.

Just as we could expect TRH from the hypothalamus to continue as before if on an ideal dose.

We all know perfect dosing does not exist and there are bound to be all sorts of perturbations due to once-daily dosing, T4-monotherapy, etc. But I see no reason to think the basic function of the pituitary in producing TSH cannot continue.

[jimh111 in reply to TaraJR]

The pituitary doesn't know where the hormone is coming from and so TSH still reflects thyroid status to the same extent as before thyroidectomy. However, levothyroxine monotherapy gives different fT3, fT4 levels which do affect the axis. Higher fT4 levels are needed to give the same fT3 , this results in a lower TSH. There is some evidence that TSH has other functions such as stimulating T4 to T3 conversion and minor roles in e.g. bone formation.

TSH is still a good indictor ... IF the axis is acting resasonably normal. After a long period of thyrotoxicosis the axis can break down leading to lower TSH levels than normal.

[SlowDragon Ambassador]

reading your previous post

healthunlocked.com/thyroidu...

So your GP should know you have been prescribed 20mcg T3 per day alongside your Levo

GP should NOT meddle with dose

You should request/insist on referral back to NHS endocrinologist

Typically that NHS referral will take 12-18 months

GP should NOT change dose while you wait

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally (if possible) choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

BEFORE any consultation

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last portion of daily dose approximately 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

essential to test vitamin D, folate, ferritin and B12 at GOOD levels

[D911 in reply to SlowDragon]

thankyou - when one said should not change, where is that written? I can banter back and forth with them forever but unless I can provide it in writing as a guideline surely they can just dig their heels in?

[SlowDragon Ambassador]

Most people on T3 will have low TSH

Most important results are always Ft4 and Ft3

If not over range and no symptoms of over treatment dose shouldn’t be reduced

england.nhs.uk/long-read/li...

[D911 in reply to SlowDragon]

This relates the T3. It’s the T4 that has been changed for me. What search phrases might I use to gather this sort of information? Google doesn’t appear to provide what I’m looking for!

[SlowDragon Ambassador in reply to D911]

was test done as recommended, early morning and last dose levothyroxine 24 hours before test

Free T4 (fT4) 16.2 pmol/L (9 - 19.1) 

Ft4 is 71.3% through range - about perfect

Your Ft4 (levothyroxine) is not over range and shouldn’t be changed if you are currently well and stable

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

[SlowDragon Ambassador]

fI you have not been able to source the preferred brands of levothyroxine then we would suggest that following a period of 6 weeks of consistently taking the medication we then repeat your blood tests and review the results with you.

If there’s one brand you prefer GP can specify this on your prescriptions

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

[SlowDragon Ambassador]

When were vitamin D, folate, ferritin and B12 last tested?

[Minimol]

My sympathies D911. Been there myself.

How you are feeling should always be the overriding factor. If you’re feeling fine then they are just treating the lab report rather than the patient. Which is not a good look for a GP. Even if there’s two of them agreeing.

Request referral back to same Endo as you are now taking the Lio they recommended and a low TSH is a predictable outcome of that. Meantime it would be detrimental to your progress to have your regime altered for the sake of a snapshot blood test result.

[D911 in reply to Minimol]

Thankyou - if I may - I might use that wording as part of my response. It’s just really stressful even having to find the energy to do the reply. I had this conversation prior to the blood test and sure as eggs are eggs this is what has happened and what always happens / it’s SO exhausting

[Minimol in reply to D911]

Yes I really do know how that feels and I’m sorry you’re having to deal with it.

Neither your free T3 or free T4 are over or particularly high in range. They’re both showing as normal. Any Endo worth their salt will acknowledge that. Any GP suggesting you take this up with the Parliamentary Ombudsman is well out of order (in my view).

Good luck.