Trying to stay positive but its hard......

[Poshbird]

Just needed to blog and get my feelings of frustration and slight dispair out.

Been diagnosed with subclinical hypothyroidism for around 12 months now and have had various levels of wellness - mostly rubbish and mostly learning to live with the fact that i will never feel my old self again. How did i get here is what im starting to say lately.

Of all the hypo symptoms i could have had, the one that is crippling me and starting to really take its toll is anxiety. I feel like im going mad with it and whilst i am convinced its to do with my thyroid, i keep getting told by my gp's and 2 endo's that they dont know why i am getting this and making me feel like its in my head - their solution is to offer more tablets as either ssri's or even beta blockers which i dont want.

I wake every day feeling tired and uptight and even doing the simplest thing is a major event for me. Its like my brain cant deal with anything anymore and im now obsessing about stepping putside the front door in case i get anxious feelings in a supermarket or at work and that something terrible is going to happen.

I feel as if no-one can help me and that like many people here you have to do it yourself otherwise your on your own. But im not qualified and am worried i may do more harm than good if i try and do things withnvitamins and supplements.

The last endo visit got to the point where they are going to test my FT3 so i can see if my body is converting T4 or not, but apart from that im not sure what else to try. Female hormones have been checked - normal, TSH is currently in normal range, vitb12 was high, calcium was ok, ferritin was low so am on some iron tabs but that is not helping my anxiety.

I cat seem to get off the level of 50mcg of levo as when i raise it i get worse symptoms of heart palps, chronic exhaustion, shakiness, insomnia etc. Tried raising to 62mcg recently and after 2 weeks felt lousy - thought i was dying. Am now back on 50mcg as i think it also contributed to me having slight hypo attacks. Am dizzy, have brain fog, tense head, tight chest and also feel like my cheeks or head are going to seize when i talk - really is weird. Have read about adrenal fatigue and wondered if it could be that but it sounds complicated.

Can anyone suggest anything or have you had similar experiences.... This is torture and although i have some good friends and colleagues who are willing to listen and help they can only do so much - i just want my life back and to be normal again.

I would never do anything to harm myself but some days it is hard to keep going and i wish it would all go away with the wave of a magic wand.

[Shona64]

I'am so sorry you feel awful. I felt exactly like this as I increased my Thyroxine slowly from 25mcg up to 100mcg. My adrenaline rushes were awful but settled once I reached a better level. It is easy to mistake adrenaline surges for hyper symptoms or reaction to Thyroxine. Often we have been depleted in levels for so long that our bodies take a while to recover and get used to increased levels of Thyroxine. Extra adrenaline is pumped into our system to boost a failing metabolism. This was my experience but hope it helps. Your body may just be crying out for more medication. I'am now up to 225mcg and my anxiety is much improved. Xx

[Clarebear]

I had similar symptoms too, and couldn't really tolerate the much-needed thyroxine. I also had low ferritin and low cortisol per a 24 hour saliva test. I managed to persuade my endo into a trial of armour and although I probably felt worse for a while, things have now settled that I am on a high enough dose. I couldn't raise my thyroxine above 50 mcg, but on Armour am taking 2.5 grains which contains 96mcg of thyroxine and 22.5mcg of T3 (equivalent to 186mcg of thyroxine in total). It took a while to get to this level and I have had to supplement with iron and adopt the CT3M for my adrenals, but I am so glad I persisted.

I think a ft3 test would be very helpful, as this may indicate a conversion problem - in which case you would probably benefit from some T3. An adrenal saliva test would be useful, to see how they are coping, but from your symptoms it sounds likely that they are struggling. Getting your ferritin up to 70-90 would also be very important.

I'm sorry you are feeling like this, but I was in a similar place this time last year and am so much better now. Hope this is a bit helpful and reassuring. Xx

[Poshbird in reply to Clarebear]

I was hoping that you would reply Clarebear - thank you.

Im almost hoping my FT3 levels are low so at least I would understand what it is and hopefully the NHS endo will put me on T3. He did say that even that doesnt suit everyone and there could be problems finding the right level but I guess its a start at least.

I asked him about Armour and he wasn't a fan so I would have to find someone else to give me that if I decided that I wanted to try it. I am going to get an adrenal test done but I think this has to be done privately and think I have found a company that can help.

Thanks again for replying - it really does help to know that I am not going mad and making up these symptoms. xx

[Clarebear in reply to Poshbird]

Just lost my reply to you will try again..

[Clarebear in reply to Poshbird]

You definitely aren't going mad I used Genova for my adrenal test - details on main TUK site. I think some people still need T3, even if it looks quite high in range, although easier to get doctor to prescribe if its low ish. I would give the T3 a go and keep the NDT in reserve. Good luck xx

[loopymoo]

I think there are a lot of us who struggle with rises in levo. I have never levelled off after a few months of feeling ill, it gets worse and stays worse but I become accustomed to the new level of rubbish so I appear "better" to the outside world.

So, this is what I've been up to the last few months to give you an idea of what you might think is a good "next step" for you:

What I know:

- Low B12 at 250 (done by NHS GP) so have been supplementing B12 and b-complex and folate.

- Low Ferritin at 32 (done by NHS GP), have been supplementing iron and vitamin c.

- I have elevated eosins due to allergies (full blood test given by NHS endo),

- low cortisol at 380 (9am cortisol test by NHS endo),

- poor adrenal function is not due to anything in the adrenals such as Addisons but due to secondary source such as thyroid (synacthen test by NHS endo)

- My ft4 and tsh have reacted favourably to a big increase in levo (thyroid panel by NHS endo)

- Vitamin D levels "insufficient" at 36.9 (private blood spot test)

- But after 4 months on new dose of levo I still feel terrible.....worse than ever

What's my next step:

- Keep badgering NHS endo for my overdue appointment which is already a month late because he said if my synacthen test was ok and I still felt bad after raising levo then he'd try me on t4/t3 combo.

- Start on 1000 vitamin d3 and 600 magnesium to sort out vitamin d insufficiency.

- Wait for results of FT3 and Reverse FT3 tests (done by Blue Horizon at a Spire hospital). If the ratio of FT3 to RT3 is lower than 20 then this indicates too much RT3 which could be stopping the T3 getting to the cells. Treatment for this is T3 only medication.

- Wait for results of Ferritin test (done by Blue Horizon at a Spire hospital). Adjust iron supplement if Ferritin improved but not over 70, or get a proper iron test done if no improvement or deterioration of levels since last time.

- Get another B12 test done to check supplements

[purplemummy in reply to loopymoo]

What was your Synacthen test result ? as your 9am Cortisol looks low .

[loopymoo in reply to purplemummy]

That is a very good question. I have asked the endo's secretary 3 times directly, and about twice via her friend leavinga message, to send me my synacthen results. I'd be interested to see if the pre-injection cortisol was better than my previous reading of 380. 380 is in range but low which is why he wanted the synacthen test doing to see if the low cortisol stemmed from my adrenals directly.

[Hidden]

Take it you have checked that your adrenals are in good shape? Via a saliva test?

[jtaylor]

please try the SSRIs I think you will benefit from them as they tackle the anxiety levels really effectively.I started taking them 10 yrs ago for post natal depresssion, this was making me wake up every morning feeling sick and terrified, but the SSRIs got rid of that so i could deal more effectively with everything else. Remember Hypothyroidism clouds your thinking (brain fog) so struggling to think will sap your energy as well and this is bad enough without feeling anxious. You've nothing to lose by trying SSRIs and if they work you've one less worry to cope with

good luck x

[puncturedbicycle in reply to jtaylor]

Although they help many people, SSRIs can exacerbate anxiety, especially at the start of treatment. I had great results from fluoxetine but it isn't usually prescribed for anxiety for this reason. They also may affect thyroid function. This is not to say they're not effective, but they're not for everyone nor are they a substitute for effective treatment for ht.

I'm convinced that there is a strong correlation between ht and anxiety as I had this kind of paralysing anxiety for years until recently, when it seemed to just vanish. I do have trouble with caffeine and have to limit intake to very tiny amounts.

[Poshbird]

Thank you all for your comments and advice, I really appreciate it. Some of the sensations are so strange sometimes that I think something terrible is going to happen and therefore it doesn't help my anxiety and its a vicious circle.

Have been taking high vitamin C (1000mcg) over last 3 days and trying to cut down on my sugar intake and apart from a racing heart at the supermarket this morning (thought it was going to jump into my trolley at some point), I have felt a bit better today and am hoping this will continue for a few days at least !

[zizi]

Hi. Sorry you feel as you do. I had exactly the same symptoms and of all the many horrible symptoms the anxiety and negative thoughts of absolute fear about anything and everything were the worst. Thought I was going mad.

Started on Levothyroxine with Dr S after 25yrs of GPs refusing to help or only suggesting anti depressants. Could not increase above 100mcg and still very anxious. Changed to NDT Erfa. Has been a long difficult process getting to optimum level but many symptoms now gone away including much of the anxiety. Probably still need to increase a bit more but much better. Still get the occasional negative fearful thought but its not often and nowhere near as upsetting.

See if you can change to NDT. It will probably take time to get used to it (10months so far for me increasing slowly) but worth it.

[AliciaM]

Hi Poshbird

This is all very familiar...am hypothyroid and hypoadrenal but can't tolerate any tablets at all as my adrenals react and heart goes crazy.....I agree with the above posts about getting a saliva test for adrenal function. I reacted to sugar and alcohol and then even carbohydrates like new potatoes.....so maybe try to step back a little form the 'reaction' and work out what is causing it. and hard though it is avoiding sugar is a good idea..though I became so reactive to wifi,chemicals etc...a bit mad really. One has to sort out the adrenals before you can heal the thyroid...Dr Barry DP and others point this out......am also aware that an underlying infection viral/bacterial or parasitical could have exhausted the adrenals so I am going to start a series of far infra red treatments here in Italy..then am going to have my amalgam fillings removed .....

Have much sympathy...I too had some very strange symptoms and almost went mad trying to work it all out.....maybe get your saliva adrenal test and poss female hormone saliva test ( see Dr Myhills website) then perhaps you'll get a better picture of your endocrine situation......keep voicing your thoughts ( something I wished I did earlier) and have faith...it will pass.

Best wishes

[Summerlove]

Hi are you still posting?