This is my 2nd post and the community was so helpful first time round I would be grateful for your advise on my current situation.
Recap: 48 year old female working overseas for 6 years and diagnosed with hashimotos 6 years ago. Been very happy on 100mcg eutirox/synthroid (t4) and 12.5mcg cytomel (t3). Returned to UK with 6 months of cytomel only to have a battle with GP re t3. Been waiting for 6 months for appointment with Endocronologist at Maidstone Hospital . Appointment isn't for another month. However Endo has written to GP stating I must continue to be prescribed t3 until I see him. Cytomel unavailable so was prescribed 12.5mcg liothyronine . Been having very unsettling chest pains and spent Christmas thinking I was going to have a heart attack. So panicked I have stopped taking the liothyronine on Jan 1st. Chest pains have stopped and I feel ok but have continuous heartburn, acid reflux and burping a lot!
Is liothyronine the same dosage as Cytomel? Are my digestive issues related to no or low T3 in system?
Just received my blood test results taken on 21st December in the afternoon 8 hours after taking levo and 48 hours after I ran out of cytomel feeling like Id been hit on the back of the head by a baseball bat
I did ask for ferritin and t3 to be tested but they haven't done it. However they have done other tests which I didnt know I was having and don't know what they are for.
Print out is marked as all satisfactory /normal and no further tests required.
Serum vitamin B12 219 range 180-914 (low but noted as satisfactory)
Serum folate 3.4 range 3.10-20 (low but noted as satisfactory)
Serum TSH 0.2 range 0.27 - 4.20 (low but noted as satisfactory)
Serum free t4 16.6 range 12-22
Serum total bilrubin 7 range <21
Total alkaline phophatase 63 range 30-130
Serum ALT level 25 range <33
Serum albumin 52 range 35-50 (this is higher than range but I don't know what it is)
Grateful for your interpretation. I now know the test should have been done in the morning and without taking the levo.
GP seems totally uninterested so I don't see any point in returning. Will try to wait it out til appointment with Endo in a month.
Anyone here have an experience with Endos at Maidstone Hospital. Do they prescribe T3?
As i said I was ticking along very nicely when overseas and hadn't really looked into my condition. i have learned an enormous amount from this forum. Thanks in advance for your thoughts
Many of us find Mercury Pharma weak, perhaps as its nearly all supplied very near its use by date (presumably as so many have had prescriptions stopped there's a stockpile)
Morningside Healthcare, personally I get on well with.
Teva is lactose free version, just on the market. Not heard many reviews
Swale CCG (Kent) has just set up a new project called Thyroid care, recognising DIO2 gene and offering it as test and also that gut biome can be upset. If patients fit either of these criteria, it's apparently agreed patients need T3
Maidstone is west Kent CCG, so probably next door? but perhaps you may make progress ? See Improve Thyroid Treatment group on Facebook for more info
Your B12 and folate are too low. Probably direct result of T3 problems. You need to supplement
You need Vitamin D tested too
Vitamindtest.org.uk £28 postal kit if GP won't
Also need ferritin tested
Ideally also need FT3 tested. Most of us have given up fighting for this via NHS and get it privately
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 money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, 12 hours T3, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
See Box 1. Towards end of article
Some possible causes of persistent symptoms in euthyroid patients on L-T4
You will see low vitamin D, folate, ferritin and B12 listed
Thank you. Are Vitamin B12 and folate supplements available from health stores. What dosage would you recomend? The bottle containing my t3 didnt reveal the name/brand or manufacturer. i will speak to the pharmacist today and find out.
What did it say on the packaging? Or on the Patient Information Leaflet (or equivalent)?
Were you taking one complete tablet or capsule?
UK liothyronine products are all 20 microgram tablets. (Though "specials" can be produced to order in other dosages. Usually as capsules.) There is no ready means of getting 12.5 microrgams from UK tablets - dividing a tablet into eight and taking five would do it but very difficult to achieve with any accuracy.
I was given 84 x 5mcg tablets. They are white, round and have a 5 and 220 embossed on them. They were provided without any guidance or information leaflet in a small brown glass bottle with the pharmacies label stating liothyronine take 2.5 tablets daily. Not helpful ! I will go and speak to the pharmacist today and found out what they were
You should always get a document with any prescription. If they do not provide one, demand one.
You should also always find out the batch number and expiry date. Otherwise what would you do if there were a recall of certain batches? And how do you know if they are in date?
This is the USA FDA's site description of that product:
You are correct. Confirmed by pharmacist who very confidently told me that no one in the UK is prescribed t3 and that she had to special Order it for me and that there is no alternative brand!
If she knows so much, why didn't she tell you and provide the appropriate information sheet?
Although there have been many who have been refused liothyronine, or had it withdrawn, there are some who get it on the NHS. And, if you can afford it, a private prescription would still be a possibility. I can't see those who have plenty of money doing without - so there will always be some who need to get liothyronine dispensed.
There are three other makes of 5 microgram liothyronine:
Sigmapharm
Mylan
Pfizer Cytomel
All are USA products and would need to be special imports through a licensed importer. All are listed on the site I linked to earlier.
Thank you as always. I’m going to try and hold out without T3 til my appt with Endo in Feb. I have a sister in law on standby in France to make emergency cytomel purchases!
You can't get 12.5 mcg with a UK prescription (unless it specifies a US or other brand of 25 mcg tablets). So you are now on a lower dose. 10 mcg or a higher dose 20mcg.
I feel wretched when my B12 is low, & better when I take sublingual methylcobalamin, so I'm at the top of the range. I don't seem to absorb B12 from my B supplement, nutritional yeast or high B12 food, hence trying sublinguals. My levels went up to the top of the range after about a month on daily 5000mcg, & I take half that dose now, as maintenance. Having folate higher in range might help too.
Odd they didn't test iron, ferritin & vitamin D. Ostrich approach?
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