Wits End with this Crappy Thyroid Disease

Morning all, after a bit of advise please as yet again feeling totally horrendous, this illness is like some form of torture that I would not wish on my worst enemy, periods of feeling really well, although brief, followed by hitting the lowest rock bottom I think I can find!!

Bit of background had RAI for toxic goiter/hyperthyroidism in Feb 2015, ( that I regret every day) would prefer hyper any day of the week compared to this hypo horror.

My levels gradually fell in to the hypo range TSH 5.3 (0.4-5) T4 17, T3 3.2, so I was started on levo 25mg in September 2015, felt worse for the first week then felt really good for about 6 weeks, then all hypo symptoms returned, so increased to 50mg, once again picked up, until just before Christmas when I became really poorly with what was thought to be a kidney infection, although this was inconclusive, just had a kidney scan waiting for the results. at the beginning of Dec my levels were TSH 0.8, T4 18, T3 4.5, so on paper pretty good, & although I felt tired & a bit foggy headed I was reasonable.

I can now honestly say I have never felt so horrendous, I seem to swing between being freezing cold & really hot, am exhausted but can't sleep, my brain feels like it won't function, but the most horrendous symptom I am suffering is just dreadful anxiety, this is something I have never endured before, its that bad I feel like the world is about to end, or I will drop dead at any moment (apologies if that is rather over dramatic) I have sent my bloods off this morning, as I am sure it has to be thyroid related. Just prior to Christmas I did try to increase my Levo to 75mg, but felt almost toxic with it, I had this chemical taste in my mouth, so I dropped back to 50mg

Apologies if this is some what of a ramble on, but would appreciate peoples opinions, I bought some thyroid S some time ago & wondered weather to give this a shot, I may be clutching at straws, but feeling just desperate.

Oh forgot to say, have also had lots of other tests done, Ferritin was 20, so low, taking liquid iron for this, but only managed to raise it to 22, cortisol is on the lower side, but 'normal', unfortunately I don't have the figures.

Thanks in advance Jayne

14 Replies

  • Good morning Jayne

    I am sorry you are feeling so unwell and most of us are very puzzled why doctors/endocrinologists cannot possibly, in any way, understand and also appear ignorant of the fact that for a number of us levothyroxine isn't the magic pill for some patients and which they inexplicably refuse to believe.

    It is o.k. to start on Thyroid S and 1 grain is equal in effect to approx 100mcg of levo.

    So for 50mcg of levo it is half of 1 grain tablet.


    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • Thank you for your reply shaws, it is very much appreciated, do I need to be off my Levo for some time before I start on the Thyroid S, or do I just replace it? Also I have read that some people take NDT sub-lingual, is this possible with Thyroid S, or do I just swallow it, sorry final question, how soon should I start to see an improvement?

    Best Regards


  • You can switch straight over - stop levo one day and start ThyroidS next. You cannot do sublingually and it's exactly the same, take first thing with one glass of water and wait around an hour before eating. Or at bedtime if you prefer as long as you've not eaten for around 2 to 2.5 hours.

    I cannot say how long you will feel a benefit as it will take a little while, I should think. Levothyroxine takes about six weeks to clear from your body gradually.

    Good luck for success.

  • Thank you so much Shaw, I am literally sat at my desk in tears, & for someone that runs their own company (or should that be running it with extreme difficulty) & very rarely cry's, I think I have found rock bottom, but I guess on a positive slant, that must mean the only way can be up!!!

  • Yes, the only way is up. The problem is that our hormones are completely out of whack thus the crying, emotional, etc.

  • Shaws, you really are a life saver to me this morning, it is so good to talk to someone that understands, I am beginning to think I am loosing my marbles.

  • I didn't say to take your pulse/temp before you begin so that you have a starting point and do the same daily whilst starting NDT (about 3 times a day).

    If our pulse/temp rises too much we have to reduce down to the previous dose, that's why I prefer to increase by a 1/4 each time and sometimes a 1/4 is sufficient to reach our optimum. Also we can feel hot but temp remains around the same and if we don't have a guideline could be mistaken about taking too much and lower it unecessarily.

    Also if we feel very hot and take temp we realise our temp hasn't changed much.

  • Low iron is linked to anxiety and your ferritin is so low it will be causing tiredness too. There is clearly not enough in your liquid iron to raise your levels... try an iron tablet, ferrous fumerate or ferrous bisglycinate, or Solgar gentle iron (Ferrochel). You should see an improvement if you get it up.

    The other question is why your iron storage levels are so low.

  • Thank you for your reply Aspmama, much appreciated, I've been trying since September to get my Ferritin levels up, started off on Ferrous Fumerate, but had to stop taking them after 2 weeks, due to severe vomiting!! I now take Spatome liquid iron, but I don't seem to be getting very far. I asked my doctor why my Ferritin was so low, he thought it could have been the fact that I had been hyperthyroid for around 8 years & my body had just exhausted itself??!!

  • I wonder, given that your iron stores aren't rising, your symptoms, and that you can't tolerate fumerate, whether the GP would consider an iron infusion?

    Have you ruled out the usual gut problems? Is your B12 low too?

  • I was wondering about an infusion myself, may mention it, although I am guessing it may fall on deaf ears. Have been checked for celiacs & B12 both normal.

  • Normal for the B12 may mean it is in range - but WHERE in the range is it ? It needs to be near a 1000 to prevent cognitive decline. So do ask for and retain all copies of your results with ranges.


    Scroll down the above link for the signs and symptoms and then have a good read about the additional testing you should ask for regarding the low Iron/Ferritin.....

  • Hello Jayne

    This may be a red herring but, I too have low ferritin (15) and have discovered that because I am a vegan it's possible that this is the consequence of insufficient Vitamin C. Just thought you might also be vegan or veggie and perhaps the same.

    On a cheerful not, although I never felt as bad as you are describing I did have exactly the same symptoms but they seem to have eased since I've been taking vitamin C and eating plenty of iron rich foods and - sob! - not having caffeine within an hour of eating.

    I do hope you get better soon.

  • Thank you for that, I have just got some liquid Iron from the GP & bought some Vit c, so fingers crossed.

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