Long post sorry but can anyone suggest what I do next?

I'm still not good. I get bursts of feeling good, (sometimes days, weeks, months even) then crash again. And the weight is piling on. I've put on 2 stone in 2 years and am only 5ft 2. Every time I try to cut down food or exercise I crash.

What I would like from readers of this site is to find out what to do next? Everything I've done so far has been due to recommendations and advice from members, I can't think how bad things would be if I hadn't posted on this site then 'told' my doctor what to do next. So now I'm 'stabilised' as far as the doctor is concerned, can you help me 'tell' her what to do next?

Here's my history. Sorry for the long story. I'm 49 at the moment. Non smoker. Hardly drink.

Throughout 2012. 5 foot 2, normal weight 9 and a half stone but I find the weight is piling on regardless of what I do. I had a bridesmaid's dress to wear and in the 4 months between buying it and the wedding, I put on a stone. That's despite doing Weight Watchers, going to Zumba, going to a Vibrafit machine 3 times a week and having those mud wrap things once a week that claim you lose inches. No matter what I did, it kept creeping on. Had the dress let out and wore it but could hardly breathe all day.

After the wedding (best friend's), I crashed, no energy, tearful, thought it was due to all the running around for the wedding. I went to the doc who put me on anti depressants, 20 mg a day of Fluoxetine so I've been on them since August 2012. Now I look back, it was probably an underactive thyroid at the time but was diagnosed as depression which I know due to this site that this happens a lot.

January 2013, I go on another diet to try and stop the weight creep. January, Feb and March 2013 I do Weightwatchers and Zumba exercise again as well as salsa classes. By the end of March I am next to useless energy wise, can hardly put one leg in front of the other, no energy at all, walking like an old lady.

The reason I got diagnosed as underactive thyroid however was really strange. For the last 5 years or so I've been bothered with severe foot pain now and again. No rhyme or reason for it, it's not brought on with cold weather or hot weather. It's not the bones, it's all been checked out by a pediatrist. They said it was likely to be 'systemic', to do with nerve endings or circulation, but because it was only now and again and not consistent, they couldn't do anything.

Anyway, when I got it I could hardly wear shoes, it was as if someone had hit the soles of my feet with a cane or as if I had sunburned the soles of my feet. They were very red when I had a flare up. By the end of March 2013 when I was at my lowest energy point, my feet flared up and instead of calming down after a couple of days, they stayed flared up for 3 weeks.Even worse, it started on my fingers and my earlobes. I googled and googled and eventually found a condition called erythromelalgia. This condition said it was normally as a result of something else wrong with the body and suggested that you ask your doctor to test for diabetes, thyroid and a few other things.

Of course, thyroid came back as abnormal. The ranges in all of these tests below are

TSH range (0.25 - 5) Free T4 (range 9-21) Total T3 (range 0.9-2.5)

(Note - I constantly asked for Total T4 and Free T3 but the lab refused to test them. They only tested Total T3 three times, wouldn't test the other times)

(Also note - the lab won't test for anything else at all, not B12 etc that I commonly see on this site like Ferritin, Calcium or Foliates. They just won't test them.).

April 2013 - TSH was 10.27. Free T4 was 10.1.

Doctor said she would leave me for 4 weeks to see what happened. I didn't know any better so a long, exhausting, tearful 4 weeks! And sore feet too, could only shuffle around.

May 2013 - TSH was 7.16. Free T4 was 11.1 Total T3 was 1.5

Doctor thought that was okay but I had already been on this site and told her I wanted TSH to be under 0.1 and Free T4 to be over 18. She therefore put me on 25 of Levothyroxene a day. Vitamin D deficiency as well so also put on Vit D 25 a day (but haven't been tested since - they say it's a once a year test!)

July 2013 - TSH was 5.72. Free T4 was 11.4. Total T3 was 1.3

Doctor thought that was okay but I pointed out that I still felt dreadful and that 25 was not enough. She increased me to 50 levo a day.

Aug 2013 - TSH was 2.76. Free T4 was 13.9. Total T3 was 1.4

Doctor thought that was good but I insisted on an increase so she increased me to 75 levo a day.

HOWEVER, I TOOK MATTERS INTO MY OWN HANDS AND INCREASED TO 100 A DAY ON 10TH September. Within 3 weeks, I felt great.

October 2013 - I did a private blood test with Blue Horizon for B12. Active B12 result was 156 (reference 25.1 - 165).

Oct 2013 - TSH was 0.17. Free T4 was 17. Wouldn't test Total T3.

I admitted to increasing my own dose to 100 levo a day and reported that I felt really good.Feet problems gone.

Dec 2013 - TSH was 0.16. Free T4 was 15.5. Wouldn't test Total T3.

Still feeling really good and back to normal. Feet problems gone.

7th October 2013 - 7th January 2013 - FELT GREAT, TOTALLY NORMAL.

7th January ANOTHER CRASH. Why? I was dieting before, during and after Christmas to try and lose weight (now 12 stone).

17th January 2014 - TSH was 0.24. Free T4 was 16.5. Wouldn't test Total T3.

Doctor thinks this is okay but I'm not good at all. What do I do now?

THE END - ANY IDEAS WHY I FEEL SO BAD? And why I cannot lose weight, any time I try I crash?

Do I have a conversion problem? Do I need some T3? Doubt if my GP would agree with this.

Is the only option open to me to insist my doctor refers me to a specialist? I've got Louise's list of specialists, there's not much going on in Glasgow. Will my GP (Glasgow ) refer me to another area (Edinburgh) where it looks like there's a better service?

I'm sorry this is so long and if you have read right to the bottom , I thank you with all my heart.

Hoping there is some advice out there.

Lynda xx

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16 Replies

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  • Wow - sorry you feel so rotten, I know how difficult and inhibiting feet pain can be although you don't mention that this has returned? There will be other people on here who may be able to assist you far better than I, but is it possibly the cold?? Apparently some people require slightly more Levo when the weather is cold??

  • Thank you Loobs 39.

  • It may well be that levothyroxine is not making you as well as you would like. Which should be health back to normal. Several studies have been done on patients complaining of weight gain and this is one explanation:-

    web.archive.org/web/2010032...

    An excerpt from another link:-

    Unfortunately, even when many patients take a dose of T4 alone that's high enough to suppress their TSH levels, the treatment is not effective for some 50% of patients. It's well worth noting, though, that most patients lose their excess weight and recover their health when they switch to thyroid hormone products that contain both T4 and T3 or T3 alone and take doses high enough to lower their TSH levels. Many can't find doctors who'll cooperate by prescribing these superior products

    web.archive.org/web/2010103...

    The links within these main links may not work but you can get the gist of them.

    We have to read and learn as much as possible as the GP's don't know it all. They diagnose alone by the TSH and ignore clinical symptoms.

    Sometimes people who have been ill for sometime pin all their hopes on a change of meds and can be disappointed. We all vary and sometimes we need to try several alternatives to find one that suits us.

  • Thanks Shaws, I'll have a read at these links. I agree with you, we have to take responsibility for our health as well. My doc is okay with me doing my own research, luckily.

  • That's a good start anyway if doc is agreeable.

  • Your FT3 is very LOW - so it may just suggest a conversion problem. Raynauds is quite common amongst Hypothyroid people from what I have read.....if that's the cause of your burning sensation in your feet and hands.... I think it would be helpful to have the VitD tested along with Ferritin Folate and Iron.

    It's good that you are able to convince your GP which is a BIG positive - so you are making great progress. When you use the word Crash - it does make me think Adrenals - there is a great deal of good information out there - you could start with the website - Stop The Thyroid Madness.... Also when you diet - or restrict calories - the thyroid can restrict it's activities thinking you are heading towards hibernation and winter - as in Hunter Gatherer times....it's a defensive mechanism I believe to conserve energy...just a thought.

    Do hope you feel better soon....

  • Thank you Marz. I think I'll have Vit D, Ferritin, Folate and Iron tested privately. Thant's a good Hunter Gatherer description, makes sense. I'll read the Stop the Thyroid Madness website as well.

  • Don't forget the B12 test too :-)

  • I couldn't agree more with Marz's "Hunter/Gatherer" metaphor. As a therapist specialising in weight control since 2006 & being diagnosed myself as Hypo last year, I now always consider thyroid function with every single client. It's been well researched that constant dieting is counter-productive - triggering the "Feast/ Famine" response for serial dieters who just yo-yo back to higher than their original weight loss. However the diet industry is massive & we've all been "programmed" to think & behave according to their rules, with the media a willing partner in crime, especially at this post-Christmas indulgence time of year!

    As ever, there's some really wise advice & kind support here & obviously for a few individuals with specific food intolerances specialist diets can work well but I'd approach with caution as it may further exacerbate your difficulties.

    Personally I'd suggest you might like to go back to basics here. For example, reduce your exercise for now & consider returning to eating as you did when you were a child - three meals a day, small stomach sized (i.e. both hands cupped together!) portions only, eat really slowly, savouring each mouthful & chewing really thoroughly, all the while tuning into how your stomach feels so that you can stop eating when you feel satisfied. Don't expect the weight to drop off miraculously but allow your metabolism time to readjust back to how it should be... Following the above alongside other really simple techniques, I've lost two stone in the last eighteen months - without being on a diet & pretty much eating what I want (& my body needs!).

    Hope this helps - if you want any more specific advice & support just PM me & I'd be happy to talk about your particular needs. Either way - best of luck.

  • Maybe instead of a diet you might be better suited to a complete change to the way you eat such as the paleo diet. I've never tried it myself i don't think i could be that strict with myself (im a weakling when it comes to my food loves such as bread and yogurt) but i get the impression from other members that have changed to eating the paleo way that they feel brilliant on it and are never hungry as they dont have to restrict intake just what they eat.

    It is also definitely worth asking the doc to test vitd again, b12 as the deficiency is linked to hypo (as told to me by my gp) folate and ferritin i dont understand why the lab would refuse mine get tested quite regularly.

  • Thanks MCoates. I'm going to go private for the tests I need, the lab is obstinate, it over-rules the GP. I have heard of the paleo diet, but don't know much about it, I'll give it a good research.

  • You have had a lot of good advice so far, but have you thought about having your antibodies tested. I have the same problem as you with my feet, due to see a podiatrist end of month. I'm prepared to bet they won't find anything! Why? because I have been diagnosed, 6 weeks ago with Hashimoto's (antibody levels high) and so doc consulted endo who said increase my levo to 100mcg daily from 75/100 alternate days. I am feeling quite a lot better and my feet aren't as painful, problem is happening less often. Also, I suffer from food intolerance (no wheat, chicken or eggs in my diet) and there is a strong correlation between Hashi's and food intolerance/coeliac. I found it easier to maintain a stable weight, even lost weight once I was on wheat free and levo increased. After so long not feeling good and such a big increase in weight I think you are going to have to be very patient but we are all here to help and encourage you on the road to well ness. Good luck

  • hi crimple, i was reading your answer to my post from 3 months ago,thank you. Have your feet got any better? Did the podiatrist help? Was erythromelalgia discussed? My feet are are as bad as ever

  • Reading your post makes me wish I could just give you a big hug! I get it- as would most people here. Practically everything you are describing is me to a t as well. I am currently in "discussion" talks with my doc about starting to take some t3 with my usual thyroid meds.

    This site is just full of info and I am sure someone more knowledgable than me will be able to give you some really good sound advice! :-)

    Stay strong- even though it isn't easy! Can you keep us posted about whatever happens next? Good luck!

  • Thanks for that big hug kiwifruit, sending you one back too. Since that post I've been referred to an endo and been put on T3. I've reduced my levo from 125 to 50 and i take 20 T3 a day (ten in morning and ten mid afternoon). It's only been a couple of weeks so I'm being patient. At the moment, I get a couple of hours of clear head after I take the T3 which is great, but then I feel the energy draining away from me. Feet as bad as ever and can only walk slowly for half an hour before I need to sit. Resigned to wearing old lady shoes now!!! Good luck with your T3 journey!

  • Hi Lynda

    I know this is a few months after you posted but I've only just read your post and it sounds like me!!

    I just wanted to say that in the end I went on the Blue Horizon Medicals site and ordered a full blood count to be taken, I then gad to go to a chosen hospital to have the blood taken. A Blue horizon doctor then analyses the result. It's costly but it was the best thing I ever did. I discovered my vitamin d deficiency and my iron deficiency. I was then given tablets by my GP for this. I've since been to an endo as my feet pain wouldn't go and she added in 10mg T3.

    I'm still not feeling well so have had another full blood count done via blue horizon which has thrown up all sorts of things and I'm waiting for GP reaction to this. I think I am anemic. However, I think my feet are better! I say I think because I'm not hobbling out of bed in the morning quite so much but they can still be painful. Therefore, I think the addition of T3 and the slow rise of my vit d level has helped this.

    How much further have you got since this post?

    Debbie xx

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