Struggling!!! Any help would be appreciated

Hi all, am desperately needing some advice I hope you can excuse the long post i was eventually diagnosed with an under active thyroid in Feb of this year, have been struggling with my health for nearly 6 years but always been told it's in my head and have some anti depressants!!! I then was perscribed Levothyroxine which I couldn't tolerate and my GP didn't really know what to do😒 so I decided to take myself off to see Dr SB and see if she could help me.. Hashimoto's thyroiditis and under active thyroid is her diagnosis.. She gave me a prescription for Naturthroid starting at a quarter grain and then increase it a month later to half a grain etc etc

I then had my bloods done again and she found that my wonderful gp hadn't even done my vitamin D and that showed that I basically had no Vit D in my body at all reading below 20...so I went on 50,000 units for 6 days and now on 800 units for a maintenance dose.

I thought everything was going ok then all of a sudden I had my hair bleach put on as usual every 6 weeks and I immediately seemed to have a reaction to it and that has never happened before I had horrible feelings in my head, especially behind my ears and in front of my ears nr earlobes and just above also a very tender scalp..and cold feeling down the side if my head too. I thought maybe an allergic reaction but this went on for nearly 5 weeks! I then saw Dr SB who perscribed me some prednisolone 6 tablets for 5 days... I took these and ever since I have now got a shakiness feeling inside that won't go away, it seems to get worse mid morning and my heart has started racing again 😁 also i can hardly walk very far now, my muscles just don't want to work and I can't seem to hang more than two items of clothing on the line before the same happens in the tops of my arms and shoulders!

The shaky wobbly feeling is extremely scary, I have emailed Dr SB and asked if it could be the Naturthroid but she says she doesn't know and has told me to stop them and see what happens! Been to my GP and as my TSH has come down below the 5 now they say I'm normal (ha ha)

My results taken on the 29/4/15 were

TSH=3.7

Free T4=10.8

Serum triiodothyronine=3.86

But this blood test was done at 3.25pm as my gp couldn't get me an appointment for 5 weeks if I didn't get it done then!

Previous result on 24/3/15

TSH =4.4

Free T4=11.5

Free T3=4.04

Serum thyroid per oxidase antibody= 1000

Am worried as I'm not on any thyroid meds at the min and frightened all my other symptoms are going to come back on top of all this that's now happening to me 😓

Any help or suggestions would be greatly appreciated.

Thank you

Kate x

8 Replies

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  • hi,

    I'm not an expert, but all those TSH readings are far too high for someone with hypothyroidism on meds. TSH should be around 1or under, to feel anything like well.

    People who are taking NDT-like Naturethyroid- often have a suppressed TSH and as long as T4 & T3 especially, are in range, a suppressed TSH is acceptable.

    My feeling is, you are/were not on a high enough dose of thyroid meds and all those symptoms you describe-sore arms, allergies etc- are hypothyroid ones.

    If that was your TSH at 3.25pm, when it's usually lowest of the day, then it must be very high first thing in the morning. Unless you can have bloods first thing in the morning, on an empty stomach, it's a waste of time in my opinion!

    Also, what are your current Haemoglobin, Ferritin, Iron studies and B12 levels doing? They all need to be high in range to absorb Thyroid meds properly xx

  • Hi Rach67 thank you for replying, I had those bloods done iron..ferratin etc but I haven't seen them..Dr SB has those results and she only picked up on my low vitamin d..which she has sorted out for me.

    I am sure your right about being undermedicated but as soon as I up the dose on the naturthroid which I had just done before she told me to stop it (1grain) then all this weird shakiness/wobblyness started and also not being able to walk very far etc and heart rate all over the place. I am not sure if it is the naturthroid causing this or maybe something else, apparently they tested my cortisol (blood test) and nothing was said about that either..so I can only presume that was in normal range.

    Haven't been able to work for 6 months due to how unwell I've been and have run out of money to keep going back to see Dr SB privately. My gp has now said she will send me to an NHS endo but I know with my blood results as they are will tell me they are in normal range like they did at my local surgery when I got the results this morning from my tests on 29/4/15. So am at a loss as to what to do to get better again 😕 x thank you again for replying

    Kate x

  • Doesn't sound to me like Dr SB knows an awful lot about thyroid!

    I agree with rach67, waste of time doing a TSH test at that time - it's going to be so much lower than it would be at 8 o'clock! Plus eating brings it down too. I was probably very high in the morning.

    You must get your results from Dr SB, it's your legal right to have them. They're your results, not hers! I reckon your B12 is probably very low, all that shaking and sore arms. Ask for your results and post them here, and we'll be able to help you.

    I'm not medically trained, but it sounds a bit odd to me to give someone a high dose of prednisone for 5 days and then nothing. I thought you had to come off those gradually. That could be causing you problems, maybe. Withdrawal symptoms.

    As to whether or not the NDT is to blame... how did you feel before the incident at the hairdresser's? Could it possibly be that, as you couldn't tolerate Levo, you can't tolerate any T4 at all? There is T4 in NDT. And how do you feel now you've stopped it?

    Also, I'm not sure your vit D is going to be high enough yet, as you said you had zero in your blood, you weren't on a loading-dose for very long, and the 800 you're on now isn't going to do very much. Might be an idea to get that tested again.

    Hugs, Grey

  • Thank you Grey for replying... I too was wondering if maybe I can't tolerate the t4. I was only on half a grain before the rise up to the 1 and had been having weird headache things before the hairdresser incident but nothing like I had after, the sensations were nothing like I'd experienced before...my gp said she thought it was giant cell artritis but had blood test done that was negative! My Vit d levels are now 86 or so it said on last blood test again done at the same time as my thyroid bloods at 3.25pm don't know if that makes a difference with that level.

    I am still experiencing the shaky feelings and no strength in legs and arms have been off the naturethroid for 3 days now, I did try cutting it back down to the half a grain again before I stopped it but no difference. I don't know how long it takes to get the naturethroid out of your system? Maybe I've not been off it long enough?

    Thank you again

    Kate x

  • Well, the T4 in the Naturethroid will be out in about two weeks, but the T3 will have already gone. You didn't get very much in one grain.

    I Don't know if levels of vit D vary thoroughout the day.

    I really think you have to get those results from Dr SB and see what your other levels are. You could have an adrenal problem - very common with hypo - or you could have very low B12 - also very common with hypo.

    Any chance of trying T3 only to see how you go? Then you would be fixed as to whether it was the T4 or not.

    How long did you stay on half a grain before going up to one? Did you not consider doing it in 1/4 grains? Helps some people to do it that way.

  • I started on a quarter went to half then three quarters it was then I had my hair bleached and everything else kicked in and also the prednisolone dose. I will try and get the other results from my GP and post them on here.

    I was hoping that Dr SB might suggest the t3 on its own and obviously I will need a prescription for them. I have emailed her my results and am waiting to hear back from her to see what her suggestions are. I don't know where I can get the t3 from without a prescription.

    Thank u again

    Kate

  • Definitely get those other results from Dr SB and post on here. All those other things have to be high in range to utilise the thyroid meds properly. This may be dismissed by medics, but those of us who struggle to recover with hypothyroidism report that this helps them.

    You may not be able to tolerate T4 in any shape and need T3 only to be well; but first, have you tried splitting up your Nature-thyroid dose through the day? Or

    increasing your dose only by 1/4 grain at a time? Staying on the increased dose for a fortnight before going up by another 1/4? 1/2 grain increase at a time may be too much for your body to cope with.

    Or what about trying the circadian rhythm-ie setting your alarm to around 4/5am and taking the NDT then?

  • Hi Rach67 yes I have tried splitting the dose..8am and 1.30 pm,I seem to tolerate it for a few days and then the symptoms start again ie shakiness ..heart rate all over the place etc, the weakness in my legs and arms has been coming on for some time but has really gone to town in the last couple of weeks 😞 I am taking 800mg Vit D3 a day as a maintenance dose and have to have 50,000 once a month to boost it. Also taking magnesium..zinc and b12 and Vit c. I have been on a low gi diet and gluten..wheat..dairy and sugar free diet as she believes I have reactive hypoglycaemia (no tests done to prove this) and because of the Hashimoto's I have tried the gluten free diet have done this for 2 months and Dr SB has told me now to relax this diet as it doesn't seem to be making me any better.

    when I started on the Naturthyroid I started with a quarter grain and stayed on that for a month then increased every 2 weeks I was ok on the quarter but every time ive tried to increase other weirdo symptoms seem to happen. Will try your suggestion taking it at 4/5am ...usually the shakes feelings start just before breakfast and get worse around lunchtime for some reason! I take my meds usually at 8am with just water and no food till 9 am.

    Thanks

    Kate x

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