HELP PLEASE

[Scampi1]

Hi everyone, I have some major problems again, was diagnosed with hashimotos 4 years ago and started menopause 4 years ago, I have only seen one endo and she put me on the highest dose possible, which made my heart beat so fast, or was that the hrt, who knows.

At this precise moment my hair is coming out by the handful, I am so cold my fingers are are like ice, but I am flushed, my tounge is coated and I have pressure in my head, my eyelids are purple and heavy, and feel very flu like, my joints are clicking and I am light headed, tired is an understatement, and my body keeps spasming, like a tic, my heart is racing, I have goosebumps that hurt, I have recently been put on hrt eastrogen patches and feel dreadful, I had to call for an ambulance last thurs had a very odd turn in my bathroom, came over all lightheaded and couldn't feel my legs, I was shaking uncontrollably, and was very hot, my voice is always husky at the moment, and I can feel like there is something blocking my throat, my results from the hospital were all fine, I feel like I am going mad because everything always comes back normal, apart from tsh up and down sometimes, can't remember what they were last time, and lost paper work, oh the confusion and panic and anxiety, some advice please from someone wKyle be great, do you think I should up my meds, I do, I am desperate for some advice, as my gp is not so very helpful.

[puncturedbicycle]

Sorry to hear you're so unwell. Sometimes it's hard to know where to start esp when you're not at your best.

I think it would be good if you ring your surgery and ask for all your recent test results to be printed out for you. You are entitled to these results, though if they're not very recent they may charge you a small processing fee. Come back and post your results here and someone will see them and give you an idea of what they mean.

Has your gp ever examined your thyroid (palpated your neck and jaw)? Have you been referred for a scan?

In addition to your thyroid results, have you been tested for vit d, b12, iron, ferritin and folate? These results will also help shed some light on how you're feeling.

Would also be good to know how much thyroid hormone you're on. Are you taking levothyroxine?

In theory it may be better to give the hrt a miss for now so you can begin to pinpoint what is making you feel unwell, but I'm only a punter and I don't know if this is the sort of thing you can give up cold turkey, so take my thoughts with a grain of salt.

[Scampi1 in reply to puncturedbicycle]

Thanks for reply, only on 75 mg levo have been for ages, when I go,to my GPS and ask for a specific test, oh we don't do that here, I have asked to see an endo, but was refused, both GPS are the same, I can't afford to go private as I haven't worked for such a long time, 16 weeks I was off from my last job, and my old gp didn't know why, I was very lethargic and had no voice at all for the whole 16 weeks, I know this sounds silly but I feel hypo and hyper very strange, gp felt my neck as per normal said she couldn't feel anything. Never been referred for a scan. I am one very frustrated lady, don't know wether I am coming or going. I feel and look like rubbish, sorry just so low at the moment again.

[puncturedbicycle in reply to Scampi1]

Don't you worry, you will learn a lot here. So many of us have been where you are now. It may be a long process but you can feel better. x

[Heloise]

Scampi, I would think your dose is too high rather than too low because the symptoms can be similar for both. But without knowing what dose you are on and what your test levels are, it's impossible to know. If, too high, your adrenals could be the cause of your symptoms. Also you could have more reverse T3 which blocks T3.

I think hrt should only be taken for about a year after menopause. Have you tried to taper off? Were you having hot flashes?

It is often that menopause and thyroid problems coincide but starting on thyroid treatment should be a gradual implementation starting on a low dose like 25 or 50 mcg of levothyroxine or NDT. Over several months you should arrive at your optimal dose. Is that what your GP did? stopthethyroidmadness.com/m...

[Scampi1 in reply to Heloise]

I am 51 been menopausal for 4 years, been ill all my life with no proper diagnosis, was told had hashimotos by one gp and then new gp keeps saying hypothyroidism, I feel so unbalanced one day I'm ok the next I am a total mess, sobbing, freezing, sweating, I think the eastrogen may have something to do with it, it seems to have made it worse, think I am going to stop taking it, been on 25 and 50 and 75 and 125 which nearly put me in hospital, yes still having hot flashes, I don't think anything is working, anymore. So very low can't stop crying today, years GPS have been putting me on antidepressants I must have had 10 different ones, and councilling which I was told from every counciler that I don't need it, because when I am well I am confident outgoing party animal, complete opposite when unwell.

[Heloise in reply to Scampi1]

Hormones will do that!!!! I've followed alternative health blogs for twenty years....Dr. Weil, Dr. Stoll and think they are heroes compared to conventional medicine practitioners who I feel have ruined women's health for years. (not with infections and possibly surgery where they do well). And now with the wonderful thyroid experts who are looking at new research and plowing through the myths and fighting for the truth. Dr. Rind has talked about estrogen dominance and it may be what you are fighting. I know it's difficult to study anything right now but if can you post any of your results it would help. TSH, free T4, free T3

I see you are on 75 mcg. so I would agree you are not over medicated, that is very unlikely on 75. I think your depression and other symptoms do not need antidepressents but thyroid meds. it has to be determined whether your adrenals are functioning. I wish your system were more supportive but very few GP's seem to consider all the issues.

People here are ordering their own T3 or NDT if they cannot reason with their GPs or Endos. It might not hurt to try some T3 if you are going to be put off for months. Here you have lost worktime which I feel is their fault due to NHS regulations. You should never have had this happen to you.

If you have time to listen to some of these, it would help you understand.

thyroid-info.com/articles/d...

thyroid-info.com/articles/r...

drpasswater.com/nutrition_l...

youtube.com/watch?v=nZ_CP7l...(Not working as expected?)

[Hidden in reply to Scampi1]

Cautiously I'd say stop taking the HRT. Menopause and thyroidism mimic each other in quite a few ways. 4 years is a long time to be still menopausal. Are the hot flashes really bad? My doctor (one of the few sensible things he's said to me) opined that 30% women never have flashes, 30% have them for up to 5 years, and 30% have them for the rest of their lives after menopause. I went through my menopause much quicker than you have, in about a year, whilst becoming hypothyroid - but although I am hypothyroid I have run hot ever since. I do think you may get a clearer picture of what's happening to you if you stop the HRT - at least for a while.

[Scampi1 in reply to Hidden]

Thank you, I called my gyni and have stopped hrt, I think it was interferring with thyroid meds because I feel much better after 2 days, still got an awful headache which wakes me up but goes as quick as it comes, not going to bother with hrt anymore it never worked anyway apart from the 2 stone I put on. I never ever want to be that Poorly again, I frightened my son and granddaughter to death. Feeling much calmer today, and hope it stays that way.

[Hidden in reply to Scampi1]

That's brilliant! So pleased.

[Scampi1 in reply to Hidden]

Thank you, I called my gyni and have stopped hrt, I think it was interferring with thyroid meds because I feel much better after 2 days, still got an awful headache which wakes me up but goes as quick as it comes, not going to bother with hrt anymore it never worked anyway apart from the 2 stone I put on. I never ever want to be that Poorly again, I frightened my son and granddaughter to death. Feeling much calmer today, and hope it stays that way.

[Scampi1 in reply to Heloise]

I am 51 been menopausal for 4 years, been ill all my life with no proper diagnosis, was told had hashimotos by one gp and then new gp keeps saying hypothyroidism, I feel so unbalanced one day I'm ok the next I am a total mess, sobbing, freezing, sweating, I think the eastrogen may have something to do with it, it seems to have made it worse, think I am going to stop taking it, been on 25 and 50 and 75 and 125 which nearly put me in hospital, yes still having hot flashes, I don't think anything is working, anymore. So very low can't stop crying today, years GPS have been putting me on antidepressants I must have had 10 different ones, and councilling which I was told from every counciler that I don't need it, because when I am well I am confident outgoing party animal, complete opposite when unwell.

[motherelle]

Scampi you need to get results and post them on here .its the first step to you getting some help .

[Heloise]

Dr. Rind: drrind.com/therapies/thyroi...

[Spareribs]

Scampi, please take a deep breath, you're amongst friends here...

Hashimotos is the common sort of autoimmune hypothroidism (treatment is the same) - you can get both sets of symptoms as your poor thyroid is attacked by your body & antibodies mop up the debris. Some folk find they can slow down/even stop this process by going gluten free.

You are entitled to YOUR blood test results, write them down if they're too mean to print - in fact you can offer to pay a maximum of £50 for all your medical records if you wish - saying that usually gets a print out. nhs.uk/chq/pages/1309.aspx

You also need to get tested for irons ferritin, folate & B12 and Vitamin D. If the GP won't do them you can go private e.g. ferritin is £20, VitD £28 and active B12 is £57. Low iron can cause palpitations too, low B12 causes nerve problems, low Vit D bone problems and depression - so eliminating these will help, and also help your thyroid function. Magnesium and selenium are often low too.

Not a good idea to just stop taking any medicine, HRT - most hormones have to be tapered down gradually - ask your GP.

best wishes Jane

[Hidden in reply to Spareribs]

Good advice re gluten free. It has helped with a lot of my symptoms. Menopause also upsets the immune system. If you put the 2 terms in a search engine some very interesting info and advice comes up. Don't discount the value of diet as part of your treatment Scampi.

[Scampi1]

I have been gluten free for 3 years, stopped smoking 4 years ago, my body didn't want it anymore, I had no plan to stop, I don't drink a lot just socially, at the moment I have headache again sweating, and I can only describe as anxiety attacks, one minute really frightend the next ok, I have appointment with gyni again she told me to take patch off, just can't get endo appointment from my gp hopefully my gyni will be able to send or do some bloods, these panic things are awful it makes me housebound.

I feel like an old lady and my life is rubbish at the moment.

I have no stresses or worries, apart from my health, it's frightening.

Thanks for all replies.

[Spareribs in reply to Scampi1]

Well gluten free should help dampen down the autoimmune response, have you had TPO antibodies tested since? Some report Ferritin & biotin help hair growth.

Yes panic/anxiety attacks are debilitating - I've run out of shops before now, you get very unsure of yourself too, I avoid shopping if I can. I'm thinking of having adrenal saliva testing, just can't get my head around it yet 'tho.

J

[Scampi1 in reply to Spareribs]

Not had TPO test what's that for, my gp does the basics, and if I ask her for extra testing point blank no. I was seeing an immunologist because I have supposedly had chicken pox 9 times, so was tested for herpes zoster virus, all clear, he is recommending to my gp that I be sent to see an endo, hopefully she will listen to him.

And I have appointment with gyni on Tuesday she may be able to do these TPO test and see if it's the eastrogen that troubles me.

Thanks for the reply.

[Spareribs in reply to Scampi1]

TPOAb tests = one of the Thyroid Antibody tests, which confirm if autoimmune, I hope your gyni helps.... sorry I know nothing about oestrogen.....

thyroiduk.org.uk/tuk/testin...

[Scampi1 in reply to Spareribs]

My gp won't test for anything, even though I keep asking, if and when I do get tested after 4 years of being so ill, if anything shows up,differently than when I was diagnosed with hashimotos, I will try and seek advice, I had to stop working, because I was so sick every couple of weeks, I think after 3 years I should be on the mend,.

What if I was wrongly diagnosed and I don't need thyroxine, what if it is just the menopause, I still sweat really bad I have anxiety and feel really wired talking a lot like I have had 10'red Bulls, libido nothing, wish I could slow down, it starts about hour and a half after taking 75 levo, sweating, nervousness, could be taking to much.

[Scampi1]

I am so grateful to everyone that responded to this thread and hope I can be of some help to someone in need.

[Scampi1]

Here are my results

Nov 2013 tsh 3.02 (0.40-4.00). T4 13.8 (12-22)

Feb 2014 tsh 2.16 (0.40-4.00) t4 15.6 (12-22)

July 2014 tsh 6.74 (0.40-4.00) t4 15.1 (12.-22)

July 2014 2.56 (0.40-4.00). T4 15.7 (12-22)

Aug tsh 2.56 (0.40-4.00) t4 15.7 (12-22)

Sept tsh 2.10 (0.40-4.00) t416.5 (12-22)

Nov tsh 0.33 (22-42). T4 22.9 (12.22). This one was taken from my gyni don't understand range on this.