My GP on hypothyroidism, circulation, dry eyes and hives.

Mat48

Hello - thought I'd update with the latest on the saga of my non-arthritic symptoms in case this also helps others with similar connective tissue problems.

I went to see my GP (the man) this morning - all primed to tell him I thought my hypothyroidism and Levothyroxine might well be responsible for all the delightful extras I've been getting. My husband read a book last year - in relation to his own health issues - about people doing much better on Natural Dessicated Thyroxine than on Levothyroxine which is a synthetic replacement. I've been on this Levothyroxine stuff for about 12 years at varying doses and never given it much thought - but was sufficiently desperate (eye drops every 20 mins and legs with storm force winds inside and icy white toes - plus hives like bites across my face) to clutch at straws and try to shift my doctors out of their apparent complacency.

Well of course I hit a very well built brick wall :? He spent most of the consultation sorting out me out with different eye drops - gel longer lasting stuff this time. Then he looked at the recurring facial hives and sort of shrugged and nodded. So as he then bent down to sort out his recalcitrant printer I went for it (no I didn't give his bum a little kick- tempting as it was!) and asked him if I could try the natural thyroxine (NTD) instead of Levothyroxine and explained my reasons.

He more or less said stuff and nonsense and pointed out that I have a long history of eczema which preceded the Levothyroxine by many years and that he is quite certain all of my symptoms are autoimmune/ rheumatology related - which of course links in with the hypothyroidism but not with the drug I take for it. He feels I'm on the right dose of the right med for my underactive thyroid and isn't very hopeful that the Hydroxichloraquine will reduce the symptoms of secondary Sjogrens or Raynauds - as he is quite sure these are. So it's a question of learning to live with them as he's fairly sure I'll have them for life as part of the whole autoimmune/ mixed connective tissue package. He said that dry eyes go almost hand in hand with RA, Lupus, Scleroderma and Raynauds does too. He feels I probably span all of these conditions to a degree although perhaps one will come to the fore again at some stage. I did query whether these would be this active when my RA seemed to be pretty quiet just now and he said yes he thought this was entirely possible as they are all interrelated but don't have to flare up simultaneously. I suppose this is a good thing although it feels like a relay race just now as to which symptom can be most annoying in turn :roll:

Finally I asked him for a copy of my rheumy's letter from appointment mid November. He looked and said it hadn't yet come through and he would phone the secretary and chase this up as it's been almost two months since the appointment. My consultant said he would see me again at his January clinic but I'm not holding my breath! He felt it unlikely that the Hydroxy would be enough for me on it's own but I really think it's working well - bearing in mind that all my issues are going to be ongoing whatever meds I take. I shouldn't moan as others have it much worse I know but the thought of a lifetime of itchy hives, icy legs and toes (even with fleecy socks and hot water bottles) and night sweats and chronically dry eyes isn't quite what I was hoping for. Plus husband is very grumpy after a night of backpain, I'm very grumpy because he snored and moaned at the same time all night and two uni aged sons are both home so our usual fallback spare beds are all taken by testosterone filled youths. :roll: :? 8)

barbara12

Oh Mat you should have gone for it...the kick up the bum I mean... I am so glad you got the words out...this is just me I go in ready to say whatever they either don't come out right or not at all...
And the letter why oh why do they take so long I am still waiting for one from my pain clinic to my GPs
I can only imagine how uncomfortable the hives are,I just hope they disappear as soon as they came..and I do hope the eye crams works but dont forget you can always ask for a second opinion...hope you get some sleep tonight....both of you...xx

Mat48

Thanks Barbara you are so kind! I forgot to ask him what to do if hives worsen again because antihistamine can make dry eyes worse. He said he thought the hives had flared up worse than usual because of the Prednisolone so I'm hoping they don't flare again although my face is always itchy and sore just now and there are always one or two of these bite like spots. I felt like kicking his bum because I just knew he was going to make me feel like a numpty as soon as I mentioned the hypothyroidism. Also because he's so damn good looking and well paid and hive and dry eye free! :roll: X

Boomer13

Good for you for resisting kicking the good-looking bum!

I don't think I have anything to add but I wonder because your thyroid deficiency is due to autoimmunity, and you have RA, SS, etc, why do they not recommend stronger immunosuppression (I'm not even sure if you have options here) to control the tissue attack on the thyroid gland? Maybe that's more of a rheumatological question......

Just a curiosity question on my part.
xxAnna

Mat48

I think my GP believes that the Hydroxy is not going to be enough for me on it's own Anna but I don't know enough about hypothyroidism (the autoimmune type is called Hashimoto's I think) to be able to answer your question at all. I think that it's not about the thyroid as an organ or the tissue it consists of or the surrounding tissue. It is about the hormones that it releases and which the pituitary releases back - and somehow these have to be balanced and if they aren't then the thyroxine is introduced to replace it. A doctor once told me that the thyroid itself is like a pot which holds T4 and T3 and TSH is the thyroid stimulating hormone that releases it. The released hormones are known as Free T3 and Free T4 and for some people these are not released in sufficient quantities because the TSH isn't right. This is probably a completely inaccurate description of the relevant biology and chemistry of endocrinology but I do have a little pencil drawing that I kept from this doctor's attempts to explain it to me and there are definitely storage pots and little arrows pointing to two other little pots! :? :?:

Anyway he didn't think that it was the job of a DMARD to prevent hive or dry eye flares - in which case why do some people with primary SS require DMARDs and even in certain cases, Biologic drugs? Is this because primary Sjogrens, the more severe version, can attack the organs rather in the way that Lupus does? In which case the thyroid is an organ - but I think SS attacks the moisture producing organs - mainly the stomach and the renal ones. Again could be totally wrong - maybe someone who really knows and has some decent braincells will explain?

GP did say that Raynauds was the main suspect for him re the legs and toes and that there is medication that can help with the circulation but he would prefer not to take me down that route (with my marvelous record for drug intolerance!) unless I started getting ulcerations on my toes and fingers. I have been told by a friend (and a doctor) with primary Raynauds that secondary Raynauds is usually much more severe - the opposite way round to Sjogrens in fact - it is very confusing and I'm starting to regret getting started on trying to fathom these other connective tissue thingies now! :oops: Mat x

Mat48

PS incidentally I do know from the NRAS HealthUnlocked forum that it is very common indeed to have Hypothyroidism with RA and Lupus.

Boomer13

Yes, it is a lot to get one's head around. Thank you for sharing information. That does help my understanding.

xxAnna