Raynaud's - Hashimoto's? I feel absolutely terrible :(

Although I'm a Hashimoto's sufferer (diagnosed in May 2013) I'm getting very bad Raynaud's attacks. When outside I lose feeling in my toes even if I wear two pairs of socks and it was particularly bad today as my left index finger went completely white. When I got into the warm it turned back into a healthy red colour but then went purple! That's never happened to my fingers, only my toes, so I'm even more worried that other parts of me are getting worse! Can this happen even when I'm on 125mcg Levo?

I'm also getting other symptoms such as acne on my forehead, sometimes becoming turning into very sore red spots when I so much as touch them - I'm 28, I shouldn't be getting this! I also have bags under my eyes, a heavy feeling in my upper eyelids as if I want to close them, pain above my eyebrow (weird or what?) pain in my chest, back and ribs and palpitations. I hope I'm not going hyper if I'm so much Levo per day. Period is also early and dark.

I don't even want to go outside anywhere because I worry I'll get stared at. :(

Any help is greatly appreciated.

Thanks

Jo xxx

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  • Hi Jo, You are suffering, unlucky to have it all start together! Raynaulds is an autoimmune disease,, I believe I have always had it There are drugs, things like calcium channel blockers, not nice drugs! I would and any way cannot take them.However, granddaughter was put on them by GOSH, years ago, they only help a little but she is fine with them.. They all help, but not a lot!Imp;important to have a diabetic test, as also a symptom of diabetes.

    I would say depends how you feel. Eyes, sounds like also Thyroid Eye disease, consultant for that,

    . Spots I would guess are directly down to the thyroid, however, also Eczema and Psoriosis can be more likely with thyroid disease.The acne if there, could be oily from hair. Try using cleanser etc more on that are, when it gets hot, it is a problem.There is treatment, if wished for.

    Best wishes,

    Jackie

  • Hi Jackie, thanks for your advice. Much appreciated. With the acne problem I've been using a paraben and sulphate free moisturiser and facial scrub. I've also got acne all over my back. None of the spots itch as it would for eczema but I had infantile eczema when I was younger. Another autoimmune link maybe?

    I had a diabetes check, only my glucose was tested and that was 4.6 mmol/L. I think the lowest it should be is 4 mmol/L? I could be wrong but if someone can corroborate that I would be grateful as that result was done when I was eating a lot of sugary things. So for it to be that low doesn't sound right for the amount of the sugar I've been eating or do eat on a regular basis.

    With my eyes, my upper eyelids feel heavier around about early evening. It's almost as though I've suddenly run out of energy and when I close my eyes they seem to feel better. Does that sound weird?

    I've now been going the other way (hyper) or so I think because although it's been very cold today I've been walking around in the cold sweating and flushing. Also had some diarrhoea which is unlike me as I always have constipation and my period has also come early and has caught me out! I don't think I'm no longer hyper now as I came back outside into the cold and my fingers went white again whereas when I was outside earlier (when technically it should be a lower temperature) my fingers were red! Can a hyper phase last that short a time?

    Thanks

    Jo xxx

  • Hi Jo, below 5 for Glucose is fine. However, the much better test ( next time) is HbA1c as gives a more constant result rather than what you have just recently eaten.It is the cabs that effect it most and of course sugar especially in fruit etc. It is all very different than a few years ago. It is actually, according to my Endo, the best diet for thyroid, any way.

    The TED ( eyes) is more common when Hyper, although I have always had it, Hyper.It sounds as if they get very tired, for what ever reason. If you just see an optician, make sure he is an opthalmic one., different training.

    I guess you were still on exactly the same dose? It could be a slight infection or some thing else effecting the thyroid, even diet. it is a very tempermental hormone! However, next time have extra bloods done, as you must have been high for that to happen.I saw your FT3 was high, which is good, but it can easily go over which is very bad. I have to keep mine high so, I have tests every 2-6 weeks depending, expensive but important for me. I cannot remember exactly what your T4 was / That is generally speaking best only in the top third of range.Vit D ( hormone, not really vit) can especially effect thyroid levels .

    No , I do not think hands would be like that, magic sounds to me!!!

    Best wishes,

    Jackie

  • Hi Jackie, thanks for your reply. :)

    Next time I will order a HbA1c from BH. I can't pay for one just yet as I'm still recovering from the cost of the one for the FT3. Unfortunately I've been paying for the private tests with my Jobseeker's Allowance so I might consider asking my GP. Is the HbA1c test something most NHS GPs do or would an endo do it?

    I've been on the same dose, yes, 125mcg. I haven't yet moved up a dose yet as I get migraines and headaches if I go up. I'll need to alternate it soon but I've been getting a myriad of symptoms that screams out hyper so I'm worried that if I now go up again the symptoms will get worse.

    FT4 was 15.3 from previous test.

    Thanks!!

    Jo xxx

  • Hi Jo - I recently had full bloods from the GP which included the HBA1c diabetes test - so it must be available (worth asking anyway). I never had acne so can't help there, I eat all sorts of meat (inc natural fats!) and veg but avoid sugary stuff/bread etc. anyway as I have no desire for it.

    As for Reynauds, I had white numb fingers (not that I was diagnosed) and used to come home from work and actually wanted to wash up just to warm my fingers up! This is less so now - but still cold! the only thing I've done is supplement Vit D (and now I've started supplementing B12 for the numbness/memory stuff too).

    I note you mentioned rib pain - GP sent me for a chest x-ray etc but it was actually low Vit D for me (it also controls calcium which causes twitches too) really you should have both Vit D & calcium tested first, even if you only supplement Vit D. Of course Palps can be over or even under medicated - I have them with no medication, there's so much in the mix (like adrenals too - I've not researched them yet - too complicated!)

    Jane :D

  • Hi Jane, thanks for your reply.

    I have no desire for bread really but I fill up on it as it's starchy and I'm still working towards a target weight of 8.5 stone (I'm 8 stone now so I haven't got far to go!) I don't need to gain weight but I was 7.3 stone at the start of the year and I looked like a skeleton. :(

    That's exactly what I do to warm my fingers up - washing up, washing my hands etc. :D

    The rib pain is really very recent. I haven't had any twitches though. I hope calcium and Vit D are things the GP tests for as I had a complete blood test done back in August which didn't include the HbA1c. Do GP practices do things differently to others?

    Thanks

    Jo xxx

  • Hi Jo, No need to pay, it is only FT3 that docs have trouble doing it, it is the NHS labs, not the GP. All the other tests that go with thyroid GP should do and should also no go with thyroid. My GP no problem , yet she counts out every single tablet, never have any spare, that is cost, drives me mad! I often say to her, drugs here are "Blood and stone"

    If your T4 range is as most of them, that would sound perfect., however, now with the FT3 that it is possible it has gone up a bit. It is more dangerous to be over rather than under dosed because of the heart connection.Migraines are also autoimmune. I guess that when you are on a higher dose it pushes your FT3 over range, only a guess, head aches etc more associated with that.

    Good night,

    Jackie

  • Hi Jackie, thanks for your answer.

    Sorry but have I gotten it right that my FT4 is ok but my FT3 is a bit high? Is that normal with Hashimoto's? I was a bit confused!

    With the migraines I get pain behind my eye and above my eyebrow. Also my eyes are looking puffy again this morning. :(

    I see my GP tomorrow re the letter I sent about the other results in my blood test being abnormal, should I mention this to her despite the FT3 being within range?

    Thanks

    Jo xxx

  • Hi Jo, It may be me, not too good at the moment,sorry if I was not clear.No not normal with Hashi , really there is no normal, half the trouble! If getting head aches etc, then it is usually due to high FT3, Yours is fine as it is, but higher could be the problem,as it is very high in range., It is often best to have it a fraction lower, in case it goes up, sometimes, possible. You cannot have tests non stop! Your T4 looks fine, depending on the range. How ever, as you are converting OK. If feeling "off" it could be worth just try to drop your T4 by a tiniest amount, just for a day or 2. That is just my own feeling and guided by what I have been told., and discovered from when I had very bad treatment. I would not ask the GP as you would not want to go down permanently. Hormones, are such funny things and easily influenced by the tiny things.

    That is what I would try, just 2-3 days and see what happens.Headaches can also be low FT3, but of course, as yours is fine, not that.

    Best wishes,

    Jackie

    Interestingly, you are like me I need to know everything about all my medical conditions in the greatest of detail. Some of my Consultants do not understand that, and hate being questioned, tough!

  • Hi Jackie, no problems!! Just wanted to make sure. :) I haven't been too good either today. Eyes look terrible. :(

    The FT4 range is 12-22 with my GP lab.

    I thought that with the headaches and migraines it could be because I'm tired but I've been having extra lie-ins. I also nap during the day sometimes, especially in the early evening (which my boyfriend absolutely hates!) I sleep like a cat and I still wake up feeling no better! I might tell the GP this tomorrow although she might notice how puffy my eyes look!! :o I might lower the T4 a little for a bit as per your suggestion.

    Thanks for your answer. :)

    Jo xxx

  • Hi Jo, Just a thought. Usually takes about a year from start of treatment to be stable, perhaps you are hoping for too much, too soon. It is a big unheaval for the body.

    Jackie

  • Hi Jackie, thanks for your answer. I think all of family and friends are hoping I'm fully better on the meds as well as the Hashimoto's having fits and starts. After months of having this illness and explaining to my boyfriend just what my illness is and what it does he finally gets that I'll get days when I'm fine and days when I'm not. He understands a bit more now. :)

    My grandparents, more so my grandfather, keeps on at me to find a job (which I am doing!) but doesn't seem to care about how I feel.

    Thanks

    Jo xxx

  • Hi Unfortunately it does take an age but you will be fine once the drugs are right and body recovered. Usually then.mostly stable.

    Unfortunately most people only good with short term illness, then they get fed up, especially those who have no idea about how you are, feel etc.. Just rest etc when you need to and ignore other people.

    Jackie

  • Hi Jackie, thanks for your help.

    Jo xxx

  • Hi Jo

    Poor you and it's really cold outside today.

    Good news is my son, 29, was told he has Reynauds when in his late teens and his granny even bought himbattery powered heated gloves . He and I have just been de icing cars something he was unable to even think about before.

    He has found that the culprit is adrenal function - Nutri Adrenal and salt water seem to really help. I shall get the deails from him when he comes home tonight.

    For him potatoes were the culprit re his skin - part of the nightshade family - for about three years we could always tell if he'd sneaked a roasty but now h can tolerate them again. Don't know if ther are any clues there for you?

    Blankety hugs on the way.

    X

  • Hiya Sarah!! Thanks for your reply.

    I was told I had Raynaud's when I was 25! That sounds years ago for me!! ;) I've bought myself so many pairs of warm looking gloves and thermal socks. The thermal socks I've still got but they're not any good when I'm out and about as they're so thick and I'd have a lot of trouble squeezing them into my boots! Battery powered gloves sound good though and might be worth investing in. Or I can ask my boyfriend to buy me some for Christmas! :) I hate de-icing my car and I find it such a chore! :)

    My boyfriend and I went to the cinema on Saturday (it was our 10th anniversary!! :) ) and even though it was quite warm in the theatre I was wrapping my pashmina around me! I was freezing!

    I don't know what my triggers are. I did eat broccoli (I haven't eaten veg in a long, long time and they were cooked, not raw) and I knew broccoli is a hypo trigger but I don't know if the same applies when they're cooked?

    For me I find potatoes quite filling if anything. I don't know if it affects my skin. Maybe i should make up a list of what I eat and what it does. That might be worth looking into.

    Thanks for asking your son about the adrenal function stuff and the blankety hugs!! :) :)

    Jo xxx

  • Hi Jo

    Just trying to catch up on mail before I have a few days of work ! Hoping I'm up to it.

    Basically son is taking Nutri Adrenal, and has been trialling salt in water first thing in the morning,He has also found The Adrenal Cocktail helpful at night i.e. half a glass of orange juice with half a teaspoon of salt and half a teaspoonful of cream of tartar ( has potassium in it). Docs not so sure as for the first time he has higher blood pressure .

    Ashwaganda has been another find seems better when he takes it. Lots of trial and error isn't there.

    He is also waiting for synacthen test results which might show more detail. He was told he has Raynauds in his teens and Dr P says no - it's thyroid / adrenal -

    Still on the case but improving.

    Hope yours does too happy mittens

    S x

  • Hi S no probs!! Thanks for getting back to me when you were able to. :)

    Salt in water sounds like a good idea. How much salt do you put in and do you drink it? I've heard of the sore throat cure with salt water where you just gargle it. :)

    I can look into getting cream of tartar - I would never have guessed that has potassium in it! :o

    That's the thing with adrenal/thyroid issues - trial and error with some things and it is frustrating at times especially when something you try initially works and then doesn't. I started on the Spatone iron supplement but a week in I felt it wasn't the right thing for me (it made me feel very sick).

    I was told I had Raynauds by a nurse practitioner before a thyroid condition was even thought of.

    Maybe it is adrenal/thyroid related as I was out yesterday - which was freezing cold - and I was wearing a cropped jacket and a knitted jumper with leggings and no gloves. I wasn't even shivering! My hands were sweaty and red - I looked around and everyone else was wearing hats, long length coats and gloves. Yet I was there wearing hardly anything warm, sweating and flushing! When I went back outside I thought to myself the temperature would have risen slightly as it was later in the afternoon - alas no, I was freezing! So weird!

    Sorry for asking but what is synacthen? Is that something worth being tested for?

    Thanks!!

    Jo xxx

  • It might be worth having a look at the link below. It doesn't solve the problem with the Raynauds but it might shed some light on the acne problem.

    Yana

    thefooddoctor.com/Acne-Ahea...

    thyroid.about.com/cs/relate...

  • Hi Yana, thank you for both links.

    I really don't know what has triggered the acne - I drink smoothies that have 2 of my 5 a day and also eat apple snack packs so that equates to 3 of my 5 a day. I've cut back on tea at drinking 2 or 3 a day and only drink coffee once a week. I've been eating more meat as I cut a lot of that out when I couldn't swallow, but I am very prone to candida, more so the vaginal sort than the oral sort. I do eat yoghurts high in friendly bacteria but I haven't noticed a huge difference.

    Also had an increase in cystitis/BV Saturday night. I had a horrible stinging sensation in my intimate area and it got worse when I went for a wee. Also had bad abdominal cramps but didn't see a GP about it as I had a water bottle which helped and washed the area with warm water. I know it's not advisable to douche there but surely warm water is ok?

    Thanks

    Jo xxx

  • I too have Raynauds, had it many years. I feel it has got worse since being diagnosed with hypothyroidism. I wear sheepskin mittens when it's very cold they do help to keep the circulation going. As for my feet it's special socks made for hikers.Other than that I have no other solutions to this horrible condition. Good luck x

  • Thanks Wednesday. It's a terrible condition isn't it. I find it embarrassing when my fingers go cold and white but the main problem I have is that I find it uncomfortable to wear warm, thick coats and jumpers and cardigans as well as gloves (when it's cold like this) because I sweat so easily when I'm wearing such things. So I work around this by wearing my knitted hooded coat and covering my hands with the sleeves as I've only got short arms. ;) If I'm out for a very long time I'll wear a vest top under a cropped jumper, leggings, two pairs of socks or mainly one pair, boots, a scarf or hat and a gilet (sleeveless jacket) or cropped faux fur coat. Some people look at me weird wondering as to why I'm not dressed so warmly to them. :(

    Thanks about the tip re special socks and mittens. I've seen some lovely mittens in a clothes shop I like and I'm considering buying them if they have a lot of thermal value. I doubt they would if it's just for the fashion! ;)

    Thanks

    Jo xxx

  • Hi Jo, there's a supplement called FRUITFLOW available from Swanson's, 1000mg and also from Healthspan, lower strength but with some B vits. and potassium added. I find both work well on circulation generally. Think it's mainly made from tomatoes so probably contains vit.C Google it and see what you think Good luck

  • Hi Foxglove thanks for your reply.

    I'll look into this! :)

    Jo xxx

  • Hi Jo,

    I have had reynauds all my life and take nifedipine 3 times daily, I was also diagnosed with hashimotos this year and developed basilar artery migraine 17 years ago following a car accident. I find the nifedipine helps a lot, I find I can't actually use my hands without it. Afraid it doesn't help with the migraines but there is apparently a link between migraine and vit D deficiency. I've recently gone onto vit d and calcium supplements after being diagnosed with osteomalacia so it wil be interesting to see if it helps with the migraines.

  • Hi Scatterbrain!! Thanks for your reply - I've only just noticed the recent activity on this post LOL! :o

    I'm sorry to hear you had a car accident and the problems it's left you. :(

    I had my Vitamin D tested at the start of this month and it's at 43.6 (>75). GP has started me on Vitamin D supplements now. :)

    Jo xxx

  • Forgot to say, afraid acne doesn't always relate to age, I still get bouts of it and I'm 49--sorry! Like you it often turns into actual sores on my skin.

  • No worries!! :) I always find that as soon as one spot goes another one pops up!! :( What I've been doing now is wash my face each morning, apply foundation to it and then apply concealer to my under-eyes and any spots lurking about. It's surprising how much of a visual improvement it makes to my skin.

    Not that I'm saying you don't make a habit out of washing your face and do what I do - I'm sure you do and that you look lovely the way you are. :) But I never used to do anything with my face.

    What spurred me into action was my boyfriend saying to me one night that my face looked really drab and dull. He still said I was pretty but I must've looked pasty white. So yes, since I've started this whole routine I've felt a lot better. I've also had some unwanted attention too but oh well. Sometimes I wish I look as unwell as I feel so I wouldn't get this hassle. :(

    Jo xxx

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