I am new here and hoping for some advice, I am at a loss at what to do next, I was diagnosed with an under active thyroid and growth in my pituitary gland around 23 years ago. I was taking a horrible medication for my pituitary and that worked and that is apparently under control (I don’t take anything for that anymore). My thyroxine levels have varied over the years but constantly struggled with weight loss and other symptoms.
in recent years my levels have been up and down, my last results has shown that I am on the higher range of normal, just above 5, I am taking 200 mg everyday! I asked my doctor why my level was high when I am taking a rather larger dose and all he could say was that they hadn’t found my optimal dose yet!
I know that things change as you get older but I never get a clear answer.
im currently 56 and on HRT, any advice or suggestions would be appreciated
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Bluezola
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Your doctor cannot give you a clear answer about something he doesn't know. And he obviously hasn't a clue what's going on! And nobody ever will have a clue unless all the right tetsting is done. It's not something you can guess at.
So, all the right testing includes:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferrritin
Doubtful your GP can/will do all of those, so it would be a very good idea if you could get them done privately. You'll find details of private testing on the TUK website.
When you've got all those results, post them on here - with the ranges (most important) - and perhaps we'll be able to work out what's going on. We stand a much better chance of doing so than your GP! lol
thank you, that’s very insightful, lots I didn’t know about the condition and testing, definitely going to go private. Thank again, will update at a later date.
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.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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 some GP surgeries still 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.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
on levothyroxine TSH is always unreliable and shouldn’t be used alone as guide on dose levothyroxine
In your case with known pituitary issues it’s absolutely essential dose is adjusted by testing Ft4 and Ft3 and maintaining GOOD vitamin levels
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you, again as previously commented, very insightful, I wasn’t aware of the vitamins that should be checked and the links to the other conditions, I’ve only ever been told, it’s under active thyroid and take the tablets and you’ll be fine! So fed up with doctors not actually hearing what you are saying.
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
thank you for replying, my brands often change from one month to the next, collect my prescriptions from boots but rarely get the same brand, always fobbed off with they’re all the same.
I have had stomach problems recently but haven’t been tested for anything as yet, just given another tablet.
Going to try and be privately referred and see what happens. Thank you again.
Mostly people seem to get Almus levothyroxine when it is dispensed by Boots.
That is actually manufactured by Accord - and you can see that on the side of the pack.
However, they only make 50 and 100 microgram tablets. So if you have a prescription that cannot be fulfilled by those, you might get a 25 in another make - often Advanz Pharma/Mercury.
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. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc. PLUS how to write prescriptions in Appendix F.
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
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
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
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.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
