Dont understand what's happening to me - extremely frightened....

[nicolajane]

I'm 42, have Hashis, diagnosed 4 years ago, currently on 75mcg Levo and 10mcg T3. Last blood results in September were TSH 10.7 (0.27-4.2) FT4 13.3 (12-22) FT3 3.1 (3.1-6.8).

Over the last 3/4 months I have been going badly downhill. I have always struggled with fatigue, depression, aches and pains etc., but I have been getting new symptoms which are getting progressively worse and are really frightening me. I'm suffering almost constant dizziness, weakness. My head feels, difficult to describe but as if I've been anaesthetized? Poor co-ordination, I seem to stumble a lot and always dropping things. My eyes dont feel right - again hard to explain but I'm having strange visual disturbances and focusing problems. Sometimes even just watching TV is too much. I feel funny around the heart and about 80% of the time I'm aware of my heart pounding - it's always worse at night when I go to bed and I often have anxiety attacks, not to mention the insomnia. I have aches and pains around the upper left side of my chest, sometimes my shoulder and left arm - nothing intense or severe but disconcerting because of where it is. The anxiety is now constant and I'm in tears every day because this is all so horrible and I'm so scared there is something really wrong with me.

My blood results I think show that I'm under treated at the moment, but could all this really be caused by my thyroid? Even at diagnosis I wasn't this bad.

I had an ECG yesterday and a fasting glucose blood test (I asked for these) but my gp is now not in until Friday week to look at the results. I have an endo appointment on 3rd December which I'm trying to hold out for, although this is about the 8th time I've seen her so I'm not expecting much.

I live on my own with my dog and I'm at the point now where I just cant cope. I have been just about managing to take my dog out for 10 minute 'toliet' walks each day but that's about it. I just dont know what to do. I dont think this is something that warrants a trip to A&E (god forbid) unless I pass out or something? I have thought about going to stay with my parents just so I'm not on my own but this is far from ideal as my poor mum is already up to her neck in it caring for my father (disabled after a stroke 2 years ago) and worrying about me is adding to her stress.

I saw Dr P in February and followed his protocol for about 3 months - halving my thyroxine, taking up to 5 nutri adrenal extra and 5 nutri thyroid per day and following a candida diet. Unfortunately, I stopped all this when he advised me to take more T3 and I went to my doctor to request some. This opened up a can of worms: my TSH was suppressed at something like 0.02 (presumably because of the glandulars I'd been taking) and I was referred back to the endo - she did a TRH test (which was normal I think) and suggested I have thyroid function tests once a month for 3 months. I also had 3 B12 injections in September which has made no difference, the next one due next month. Needless to say I still haven't been given the extra T3.

I would really appreciate any advice........

Nicola

[MaryMary]

Hi, I'm not medically trained, but you look undertreated to me with both Ft4 and FT3 right at the bottom if the ranges and TSH far too high (needs to be below 1 for optimum health when hypothyroid, I believe). So you need an increase in medication. Also worth having B12 retested. Have you been tested for Vit D, folates and ferritin levels? If these are low, then this would add to your problems.

Other people on this site will be able to give you more information to help you ask for an increase in meds. It is good news that the endo wants your bloods done every month for 3 months, so I suggest you do this a.s.a.p. Write down all your symptoms (they sound like familiar hypo ones to me, to take to GP or endo. Take your basal temperature (on waking) as this is another good indicator and may well be low in your case. You say you have hashi which mean that over time your own thyroid is producing less of it's own hormones, therefore, you need to keep increasing the replacement.

Prior to the endo visit, would it be worth asking your GP if you could up the doses a bit?

I hope this helps and good luck!

Mary

[nicolajane in reply to MaryMary]

Thank you

[Marz]

As you have Hashimotos it's possible you may have gluten sensitivity - which is so common in people with auto-immune issues. Try giving up gluten for a few weeks and see how you feel - you may be surprised. Aches and pains may well disappear. Giving up the Nightshades may also help the aches and pains - tomatoes, peppers, potatoes, aubergines.....

Do hope you soon feel better.....

[nicolajane in reply to Marz]

Thank you. I have been procrastinating on giving up gluten for some time. I did it for a while before I was diagnosed with hypothyroidism and i found it very hard. Gosh I'm not sure i could give up the nightshades - I'm almost vegetarian and these are my staples. Are oats ok if you're gluten free?

[puncturedbicycle in reply to nicolajane]

You can get gf oats or you can try to live without them for a few weeks (they are controversial on a gf diet).

Do see if you can give it a go. It wasn't as hard as I had expected to give up gluten, and it gave me a feeling that I was taking some control over my situation.

I have felt very ill like you, though I'm lucky that this didn't happen to me until I was living with my partner. I lived on my own for many years and it is very awkward to try to do it all on your own when you feel so ill. Do you have friends or can you hire a local teenager to take your dog out sometimes, just to give yourself a break?

[5858 in reply to Marz]

I was tested for gluten with endoscopy. Came out ok ….do you think it still can affect you ...I have Hashi and most my symptoms have resolved except my muscles and tendons in my legs. They get really stiff after driving and so on. I have been asking today on some of these post if anyone has had these problems. I am getting a copy of Hashimotos thyroiditis the root cause. I read a sample chapter and it was about diet. And it sounds like a good book. Wish everyone the best. Susita

[Marz in reply to 5858]

The best way to find out is to give up gluten and see how you feel. I have given up the Nightshades too .....they cause problems with aches and pains...

[5858 in reply to Marz]

Thanks for taking the time Marz.

[Jubes]

Please don't be frightened I have hash and when I was under treated on t4 I had those symptoms, I expect if you took your blood pressure it might be a touch too low, causing a bit of dizzyness hopefully your GP will get that tsh down into the reference range and its good you are being monitored monthly, not long till Friday but yes I know when I'm not optimal I drop all the cups, just read all you can before Friday so you come away feeling you have some control and can ask for what you need. Take care x

[nicolajane in reply to Jubes]

Thanks, yes my gp did do my blood pressure last week and it is on the low side. I've been told it's a bit low several times. Gp is pretty clueless re thyroid treatment, I think I'll be better off waiting till I see the endo next month, just got to get through the next fortnight I guess.

[Hidden]

Hi NicolaJane

As I think the others have said, I can't say if there is anything else wrong other than your thyroid issue but I can certainly tell you that I also had/have most of the symptoms you've described. The chest/shoulder pains have gone away for now... touch wood... and I sometimes get palpitations when I'm under medicated where my heart skips beats then pounds to catch up. I also have visual disturbance and problems focussing. And I'm certainly clumsy too! Hang on in there. Hope this gives you some comfort that you're not alone xx

[Marz]

Re-reading your post it sounds as if your B12 was LOW. You say you are due another injection next month. Some people are so low that waiting a month is not a good idea. Maybe read up on B12 deficiency and anaemia. b12d.org b12deficiency.com Low B12 can give such awful symptoms and some are similar to hypothyroidism. You will be at a higher risk being a vegetarian.

Have you had all the tests done for Ferritin Iron Folates and VitD. All these need to be high in the ranges. Are you taking just T4 or T4/T3 ? Hampster1 posts well on anaemia and B12 - so maybe check out some of her information through the Members box at the top of the page on the purple bar.....

Hope you are feeling better today...

[Hidden in reply to Marz]

Marz is right about the B12, since you appear to have neuro symptoms the treatment should have been injections every other day until no further improvement, then 2 monthly maintenance. This is in the BNF section 9.1.2 and in the NICE guidelines:

cks.nice.org.uk/anaemia-b12...

I'm not surprised you don't feel better, 3 injections would have been like a drop in the ocean. You also need top end of the range folate and good levels of ferritin, at least 80. If your folate is anywhere near the bottom of the range you need a 5mg folic acid supplement from your doc. You also need to eat lots of potassium rich foods and watch magnesium levels when on B12 treatment, and a B-Complex is a good idea.

The serum B12 test is useless and is not relevant once on treatment, you need to go by symptoms.

This link has lots of info and also links you to other support groups:

b12deficiency.info

There is a PA Facebook Group that's very active:

facebook.com/groups/1749289...

In addition to that I agree with the others your results are still hypo, I'm not surprised you feel like going to A&E - I actually did when I'd gone hypo and I had untreated B12 def and folate def, thought I must be having a heart attack, it was hideous, but I was of course told I was "normal".

Hang in there, maybe see you over on Facebook?

Hampster x

[nicolajane in reply to Hidden]

Thanks for this info, really helpful and I've joined the facebook group! My B12 result that prompted the injections is in my reply to marz below......

The B12 injections thing was a bit of a nightmare - they weren't actually prescribed, rather it was a suggestion on a letter from endo to gp that I could have a 'trial' of 3 x injections every other day (it didn't work out this way due to lack of appointments, was more like every 2/3 days) followed by 1 injection every 3 months. Gp totally clueless and caused the practice nurses much confusion - each time I went for a shot (different nurse every time!) I was told that this was not the usual loading dose and then had to watch each nurse get into a flap finding my notes as there was no actual prescription as such. I have no idea when the endo thinks I should have the B12 re-tested. I'm thinking now that I will need to get an active b12 test, but highly doubt my gp will agree to that.

[nicolajane in reply to Marz]

Thanks Marz. I'm on 75mcg Levo + 10mcg T3. Results from August were B12 185 pg/mL

Ferritin 71ug/L

Folate 6.2 ng/mL

Vit D 93 nmo/L

I dont have the reference ranges I'm afraid, though I was told all results were within range.

Thanks for the B12 advice, I will definitely read up on this.

[Hidden in reply to nicolajane]

I think you probably needed a folate supplement as well looking at your result, and B12 was very low. Did the GP or Endo do any antibody tests on you? (Anti-parietal cells / Anti-intrinsic factor)

See you on Facebook, I'm not disguised as Hampster over there, although my surname is similar so maybe you'll spot me! x

[nicolajane in reply to Hidden]

no they didn't do any antibody tests. Should I ask for these?? I am taking folic acid now, is this the right supplement to take? will look out for you on FB

[Hidden in reply to nicolajane]

What strength folic acid are you on? There are more active forms of folic acid, such as Metafolin, but it's very individual as to which one you get on with, which is to do with some complicated stuff related to methylation defects. I take bog standard folic acid at the moment, might try and switch at some point, but last time I tried stopping the folic acid I got deficiency symptoms again.

[Hidden in reply to Hidden]

And yes, see if they'll do the antibody tests.

[Marz in reply to nicolajane]

I think the Active B12 Test is a private one through one of the London Hospitals. Can be sent in the post I believe....Your VitD looks low and should be much higher....to feel well. It can make a huge difference. Ferritin they say needs to be around 90.

Please do not accept things are good when in range - many things need to be towards the top of the range. so do ask for ranges as well as the results......

[nicolajane in reply to Marz]

oops replied to hampster instead of you - useless concentration at the moment. See below......

[Hidden]

Apart from anything else you appear to be suffering from raised anxiety, this is a condition not just a word. It happens when you have got to the end of your tether and as you say you are not coping. You need to discuss this with your doctor because they can help even if it's not medication (or sometimes that is ok too) they can refer you to a counsellor right away, yes, right away. It has just happened to me. I have been under severe and ongoing stress for eighteen months and more and more has been piling on and two weeks ago my dog became critically ill and was "dying" for eight or more days and the fright and the tension and the anxiety would not switch off after the initial problem was calming down and I started to get these feelings of feeling really ill but not being able to put my finger on it, then I realized I had had the same feelings forty years ago and I had been treated for anxiety. This happens when your body has been in a state of tension for a long time and it just won't let go sometimes without some help.

[nicolajane in reply to Hidden]

Thanks for your reply, yes I probably am suffering with anxiety, in fact I know I am. Thing is I've had problems with anxiety on and off all my adult life and this feels different - i.e., it's the physical symtoms that are causing me the anxiety whereas before it's always been the thoughts followed by the symptoms - that probably doesn't make sense at all! I am reluctant to start taking antidepressants at the moment because I know that things are not right with my thyroid treatment and possibly other things like adrenals and b12, if I am still feeling anxious when these are being dealt with I will consider it. The difficulty is getting the right thyroid treatment from the nhs which is proving to be a never ending battle.......

[puncturedbicycle in reply to nicolajane]

Anxiety is also a big hypo symptom. When I tried to reduce my t4 in order to increase my t3 my anxiety went off the charts within a couple of days. I found a small amount of anti-anxiety meds very helpful temporarily.

I agree with your decision to avoid antidepressants for the moment. If you focus on your thyroid issues it will be easier to attribute any improvement in your mood to improvement in your thyroid if you see what I mean. If you hit it from lots of different angles it will muddy the waters.

Good luck.