Strange symptoms

[Francis1957]

Just wondering what optimal vitamins I need, I have to be careful as I have Coeliac disease, at the moment suffering terribly with tiredness, mouth ulcers, dry skin including lips and my hair is also dry, I am surprised I can stay awake long enough to type this message (I usually fall to sleep on the keyboard). I have Hashimoto's as I have 7 auto diseases in all and my last 6 monthly test says they are ok, although my Endo says my last test shows TSH is less 0.05U/L (0.4 to 5.5) and he should reduce my dose but I ask him not to as I'm really sensitive to symptoms so he won't and he says however, my Free T3 were in the normal range with a T4 of 13.3pmols/L (11 to 26) and T3 4.8pmols/L (3 to 6) Currently on Levothyroxine 75mcg and Liothyronine 20mcg per day, I have informed the Pharmacy NO Teva products upsets me and I have been sticking to Mercury Pharma but the 50mcg in Levo they have been giving me Almus as the chemist (Boots) suppliers cannot get them the store I use are very good any other drugs I am on they get me the brand name also if anyone knows of any to the Almus which are preferable I would be grateful of the info

Regards Denise

[SlowDragon Administrator]

As coeliac ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

How do you take your T3 as single dose or as 2 or 3 smaller doses spread through the day

T4 of 13.3pmols/L (11 to 26)

T3 4.8pmols/L (3 to 6)

Currently on Levothyroxine 75mcg and Liothyronine 20mcg per day,

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Last 5mcg dose T3 approx 8-12 hours before test

Many people on levothyroxine plus small dose T3 find they need Ft4 and Ft3 at least 50-60% through range

Currently Ft4 is only 15% through range

Ft3 is better at 60% through range

You might be better with 5mcg reduction in T3 and 25mcg increase in levothyroxine…or 12.5mcg increase in levothyroxine initially

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

Request GP specify brand on all future prescriptions

[Charlie-Farley]

Good advice from SlowDragon and you get a much clearer view of results when they are converted to percentages within range.

I have spoken to meds management at my doctors surgery directly and they have popped a note on my records to keep me on a specific brand which works for me. I’ve doubled up by having notes at my pharmacy to the same effect. I still check when I collect though as there have been mistakes made in the past, but it is quickly rectified.

I think a lot of people so they might have side-effects from being put on different pills each prescription do not realise they have the right to stipulate one brand. Consistency is so important.

Also if you are on T3 isn’t the TSH suppressed in any case? So TSH should not be used to regulate medication. I’m sure I’ve seen this mentioned several times on here. Not sure if a search will take you to past posts on this. Perhaps someone can point you in the right direction

[CoeliacMum1]

Hi I also have Coeliac Disease & Hypothyroidism/Hashimoto’s and you are possibly describing nutritional deficiencies or not best range for you, regarding tiredness and mouth sores… have you seen a dietitian or nutritionist?

Low B vitamins are often associated with tiredness/sore mouth along with low iron/ferritin.

When I mean well in range if you take the nhs B12 range… anything over 190 is ok according to a GP (or it was).

I know I’m not right even below a level of 500, we are all different so yours maybe lower than this or even higher to make you actually feel well, but it seems many only feel well in higher levels.

Do you supplement your diet at all?

My deficiencies have been in the past, Iron, ferritin, B12, folate and Vitamin D3 all of which seem to be very common amongst coeliac & thyroid sufferers and with other autoimmune conditions, so I’d pay particular attention to eating a very well balanced, varied diet.

If all these are well within a good range, rule out what your GP suggests is likely to be a problem.

I’m on 100mcg levothyroxine (Almus mostly but the odd time Accord as my pharmacy can’t get Mercury 🤷🏻‍♀️ and likewise don’t get on with either Aristo or Teva) and now on 10 mcg of Liothyronine (Morningside)

I take the spray Better You 3000 D3 with vitamin K and have B12 injections every 3 months.

I’m back on HRT as I feel many things cross over with perimenopausal/menopausal symptoms too, so only topping up to basic level of these hormones too.

My diet I’m told by couple of NHS dietitian's is excellent but I find a nutritionist would be far more likely to find me the best diet to suit me, a dietitian in my opinion (from experience) will mostly go by NHS guidelines and cover all bases but not necessarily at an optimal level for the individual and would be ok too with just in range levels, but they will check your at least getting a well rounded diet which is still valuable and a necessity.

You should being coeliac at least had one consultation with a dietitian along with a Dexa scan to check for osteoporosis via NHS.

They may do algorithms for Dexa scans via NHS going forward as there’s a long waiting list, I was told but I had my scan done privately.

Annual checks for coeliac levels and the basics eg iron, ferritin, B12, folate and D3.

They are now recommending 5 yearly pneumonia jabs also, my GP is on the ball and actually text me just before Christmas to book that any time now.

My gastroenterologist includes liver function tests, Kidneys (U&E) which my GP now covers also.

So I’d get your next annual results and see if you need to improve any of them, as mentioned, if they’re ok ask your GP what’s next then as you shouldn’t feel like that, maybe there’s room for some improvements regardless of NHS range.

Being Coeliac gives most some absorption problems, so you may think your diet is good, and for someone without any autoimmune conditions, it maybe, I think we have to step up a gear or two in many areas.

Hope you find some answers soon.

[HashiFedUp]

I have a friend who has Crohns disease who gets her vitamin and mineral supplementation via injections, because of absorption issues. Not sure if this would be an issue with coeliacs disease but perhaps worth a try?