Help! Apparently my symptoms are not thyroid related. Advice please!

[MiniMum97]

Would really appreciate some thoughts before I go back to my endo. I just cried for half an hour when I received his email.

Bit of background - I was diagnosed as hypo last May (after feeling very unwell for many months but it wasn't until May that both my T4 and TSH were out of range). Put on levo after a few weeks/months started to feel better. I then started developing hyper symptoms in Dec, came off levo in Marchish as T4 and T3 way over range, and was diagnosed with Graves a few months ago (positive TSI test). I was placed on carbimazole 5mg a day. NB I have never tested positive for hashis antibodies (TG or TPO) and have had the test several times; I suspect I do have hashis as well as graves though.

The next test after being on carbi for 6-8 weeks was as follows:

TSH - 0.02 (0.27-4.2)

T4 - 12.1 (12-22)

T3 - 4.6 (3.1-6.8)

Carbi was reduced to 5mg every other day then next test @7weeks later (ranges as above):

TSH - 1.98

T4 -10.4

T3 - 3.9

Carbi was stopped as endo said graves no longer active and I may "have gone hypo again" and then next test @6 weeks later (ranges the same):

TSH - 1.44

T4 - 12.9

T3 not tested

In addition, I have had problems getting my ferritin up to a decent level since July 2016 when it was 8.9 (13-150). I got it up to 42 at one point but it dropped again to around 30ish for most of last year while on levo but felt OK on this level once my thyroid hormones optimised.

Since my thyroid levels have dropped my periods have got very heavy again, and my ferritin level has dropped to around 24.

I have been getting the following symptoms which started after going on carbi (so once my thyroid levels started dropping):

- Dizziness/balance issues

- Breathlessness

- Fatigue

- Poor concentration

- Dry skin

- Constipation

- Worsening of tinnitius/wooshing in ears

- Feeling cold

- Worsening of eczema

- Parasthesia

- Headaches

- Muscle pain/RSI

- Low mood

- Very heavy periods

- Palpitations

- Numerous bugs/bugs that won't go away.

Some of the above could be explained by low ferritin having done some research.

I was unable to go to work the week before last. Worked reduced hours last week and have been signed off sick again for two weeks. I am really struggling and was desperately hanging on for yesterday's blood test. On the basis of this test, I asked the endo if I could go back on levo. He said that my symptoms are unlikely to be thyroid related and had I spoken to my GP! I feel like I am back to where I was a year and half ago, having to play the game, waste NHS resources being referred to all and sundry while waiting for my thyroid hormones to go out of range.

I really feel very similar to the way I did around the time of diagnosis, am I wrong and this isn't my thyroid? This disease really makes you doubt your sanity.

What can I say to my endo? He's been pretty good up until now. Why is my TSH still so low when my T4 is also low? Before diagnosis my T4 was hovering around 11/12 for ages and I felt awful, it's only ever so slightly higher at 12.9 now and if I was on levo that would be way too low, so why is it OK now?

My TSH is much lower than it was back then - does it take a lot longer to catch up? I thought it took 6-8 weeks to respond to changes in meds?

Could all my symptoms be down to my low ferritin? My GP is fairly clued up and wants my ferritin to be at least 50, so I've gone back on the ferrous glycinate tonight as everything else I've tried is not working. Obviously that takes months and months to do anything though.

Please help I feel desperate. Results pre and on diagnosis below in case that's any help (all ranges the same):

27/07/2016:

TSH - 3.19 (0.27-4.2)

T4 - 11 (12-22)

T3 - 3.1-6.8 (3.1-6.8)

22/09/2016:

TSH - 3.38

T4 - 12

21/11/2016:

TSH - 4.15

T4 - 11.91

T3 - 3.75

29/03/2017:

TSH - 4.32

T4 - 11.67

T3 - 4.06

08/05/2017:

TSH - 4.8

T4 - 10.9

T3 - 4.7

Thank you!

[asiatic]

Perhaps your meds were withdrawn too soon and your Graves is still active. You could look into Block and Replace regimen and discuss this with your endo. Like you I fluctuated hypo/hyper until I was changed to this treatment and I now feel fine.

[MiniMum97 in reply to asiatic]

I don't think my graves is active, my T4 is at the bottom of the range. If it was active I would have expected my T4 to be high again when the carbi was withdrawn.

[asiatic in reply to MiniMum97]

If your TSH is going down it could be your Graves is still active. What I was told is there are 3 different graves antibodies - stimulating, neutral and blocking and different ones can dominate at different times. That is why block and replace is better if this is happening to you. I have no medical training so you might want to confirm this with your endo.

[Cooper27]

Your results look more like hypothyroid than hyperthyroid. What were the dates of the first 3 tests you've listed?

I'm surprised your endo put you on carbimazole at any point to be frank!

Edit: I think I follow you now - your test results in May were what prompted your endo to put you on carbimazole? Then the first results in your post were July time, then August? I'm not a thyroid expert here, but if I were you, I'd ask for a different doctor - your results show hypothyroid, and putting you on carbimazole seems crazy!

[MiniMum97 in reply to Cooper27]

My last three tests were 07/08, 02/10 and, yesterday, 13/11.

Endo put me on carbi because T4 was teetering about at the top of the range and I was getting fluctuating hyper symptoms (as in days feeling fine, then days with slight hyper symptoms).

[Cooper27 in reply to MiniMum97]

Is there maybe a typo on one of your results? Because none of them show T4 at top of range, so I'm a tad confused...

The one thing with auto-immune disease, is that it's actually very common for you to get symptoms of both hyper and hypothyroid at the same time. I know that it's possible for your results to swing about too, as your thyroid tries to fight the auto-immune attack, unfortunately I'm more familiar with hashi's, but I know many here have graves, so I hope someone will be along soon that understands graves better!

[MiniMum97 in reply to Cooper27]

No I didn't list that result as I didn't think is was relevant to my question which was about my recent results now (which are more "hypo") and didn't want to overload the post with all the results. I put my results when I was diagnosed hypo as I thought that comparing those with my latest results might be helpful. I do clarify that I tested positive for TSI. Sorry if it wasn't clear but it's hard to know what info to include and what to leave out.

[MiniMum97 in reply to Cooper27]

For clarity, on 15/03 my T4 and T3 were 30.2 and 11.6 respectively, and I was having hyper symptoms for about 3 months before this test was done. The endo then tested my TSI antibodies which were positive for graves. Endo was trying to push it into remission. I don't think this was wrong.

My question is about my current results - I think I need levo, my endo doesn't. And I don't understand why my TSH is so low (and got lower than then last test) when my T4 is so low.

[Cooper27 in reply to MiniMum97]

That makes more sense now don't worry about giving too much info. I was just worried for a minute that your results had been misinterpreted by the endo!

Your most recent results, and your symptoms, sound like hypothyroid. Given how long they've been so consistently poor, I think you need to be given T4. I'm still hoping someone with Graves can help advise how long for though!

Are you being given iron supplements at all? If not, SeasideSuzie is very good for that - hopefully someone can tag her (it never works when I try)!

[MiniMum97 in reply to Cooper27]

Yes am now back on the ferrous glycinate even though it gave me horrible symptoms as nothing else I’ve tried is working.

[MaisieGray in reply to MiniMum97]

Yes, I too was wondering where are the results showing you were hyperactive; and the reason it is important is that a number of members in the middle of a Thyroiditis flare have been wrongly diagnosed as having Graves', which then sent them on a completely wrong treatment road.

[MiniMum97 in reply to MaisieGray]

Yes I know which is why I made it clear that I tested positive to a TSI ab test.

[AziAzi]

Hi,i have Hashimoto for 5years and micro glandular neck.i have all your symptoms.i am using levo for 1year and disage change from 50mgto 75 mg after 6months use.at this time i have twitch in my leg and sometimes jery in my leg muscle. Also parastesi in top of some fingers and toes all limbs.i went to neurologist and mri seems no serious and neuropatic disorder.i am so worry too and reasearched so much .hashimoto could make hypo and hypo in period of time .one of my freind had hashimoto and hypo after several years find hyper and sever gravis.maybe this period be short gor you but levotiroxin ,hashinanc grav has similar and disturbing side effects similar together. Infact my symptoms after use if kevo changed but it is more sever now although use of levo this time.

I think better for use of neck sonography for diagnosing of yiur problem follow doctor instruction.

Hope you be better.

[samaja]

Hello. I have Hashi so cannot comment on the Graves component but I was hyper within Hashi as well as and from my reading I remember that Izabella Wentz says you can in fact have both at the same time and antibodies are not always present so it is better to diagnose by the thyroid scan and symptoms.

As to your ferritin - if you are experiencing the cramps etc I would say it is not the right supplement for you in the sense that you might want to try different companies' products because even the seemingly same formulation can differ from one firm to another and one will work while others won't. The simplest shortcut is to find a good kinesiologist and muscle text what works for you individually rather than go by trial and error. I certainly swear by it especially since my experience with iron supplements in the past.

Hope you find you answers soon!

[SlowDragon Administrator]

Your results strongly suggest hypothyroid not hyper

I think you need full private testing of vitamins and thyroid antibodies

When did you last have B12, folate, ferritin and vitamin D tested?

What supplements do you take?

Would suspect low vitamins and/or DNA issues

Blue Horizon DNA testing

bluehorizonmedicals.co.uk/t...

Just DIO2 test

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

Are you on strictly gluten free diet?

[MiniMum97]

I might repost, as I think my post above is confusing everyone! I have a lot of brain fog so perhaps I am not being very clear. I'll try again.

[SlowDragon Administrator in reply to MiniMum97]

Has any medic done an ultrasound scan of your thyroid

[MiniMum97 in reply to SlowDragon]

No I have been thinking about getting one privately to confirm whether or not I have hashis as well as Graves.

I saw my GP a couple of days ago and they were receptive to me probably going back on levo as my T4 is very low in range now and is about the same level as it was when I was diagnosed hypo and had hypo symptoms (ie 11-12 ish). She just wants to give my thyroid a few more weeks to see how it responds to not having carbi so said let’s retest in 3 weeks which I don’t disagree with.

Not sure if it’s worth getting a thyroid ultrasound yet or not. Am still mulling.

[SlowDragon Administrator in reply to MiniMum97]

What are vitamin D, folate, B12 and ferritin levels like?

Are you supplementing any vitamins

Are you on strictly gluten free diet?

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[MiniMum97]

Hi Haven’t checked vitamin d, folate or b12 for a while but I do supplement (d3 with k2 5000iu every other day and.thornes b complex). Am intending to check these at blood test in a few weeks. My ferritin is on low side (25) as I mention above but have struggled with tolerating iron supplements so have tried lots of other things. Tried sublingual spray in last 6 weeks but this gave me stomach issues as I suspect j was swallowing a lot of it. Have since decided to just go all out for it to get my levels up ASAP as I seem to be able to maintain with “active iron” which I can tolerate. So I am now on 4 x gentle iron split into two doses taken with 1000mg of vit c. An active iron tablet. A dessicated liver tablet and eating liver pate! We’’ll see what this does!

I do feel a bit better since starting the above regime but that could be coincidence as it feels too early to have an effect.

[Inafunk63]

I kid you not, I had a similar experience regarding carbimazole. I discovered I was intolerant to it and put myself back on PTU. I’d feel my absolute worst about 20 minutes after taking my tablet and symptoms would ease a bit but not disappear about 8-10 hours later....like at bed time! What a life!! The breathlessness was probably the most debilitating. I’d have to stretch and distort my body to get what felt like a decent amount of air only to get a good breath and then still feel like I couldn’t breathe. I felt like a had to make a conscious effort to take every breath and if I didn’t my body was going to just stop breathing. And Like the air wasn’t going to the lower half of my lungs or like I was sucking through a straw. And the yawning! It gave me really bad anxiety to because i felt like people were watching me which then seemed to aggravate everything. I to went HYPO after being put on carbimazole and my Endo said my symptoms weren’t carbimazole related but HYPO related instead. Well I stopped it a few weeks ago and went back on PTU and I still have definite HYPO symptoms but the awful breathlessness and room swaying and balance issues were gone within a few days. I have more of a depersonalisation thing going on now (that’s the best way I can describe it) with really bad brain fog, maybe HYPO related, maybe not but at least I can breathe. I hope you feel better.

[Inafunk63]

Oh and I forgot to say about the chest pain and palpitations. I had actually decided maybe I’d developed asthma as I know it came come on in adults. I’d just be standing or sitting somewhere, eating or having a conversation and I’d get this thud in my chest like someone punched me and every nerve in my body would stand up, like this weird panic response and immediately I’d become completely irrational, in 0.5 seconds this thud and uncontrollable rush of panic had made me convince myself I was dying in the next three minutes. It was awful! I’d also have this constant pain and tightness in the middle of my chest. Had chest x rays and ecg’s when I went to a&e a few times thinking I was having a heart attack. It hasn’t happened ever before I was on carbimazole or now since I’ve stopped taking it.