I need my health back, every day is a struggle.

[Dimples]

I underwent a Total Thyroidectomy three years ago, now take 125mg Levothyroxine daily, I have numerous health problems now, Gynae, High Blood Pressure, Anaemia, Skin Complaints, Fatigue, Brain Fog, Bursitis, Raised Liver Function Tests, Doc insists Thyroid levels are within limits, I feel wretched.

[Lynsey83]

Poor you, can I ask were you hyper before / Graves disease? Did you try Radioiodine treatment first? I'm guessing you had to have the total thyroidectomy. Can't they do other tests? Blood tests don't show everything. I just had a thyroid scan which showed how badly my thyroid is functioning but my latest T3 count was normal. I've not been through the surgery so can't help there but I hope someone can give you some advice. My only advice would be to keep going back to the doctor, annoy the living hell out of them until they do something as it's not fair to leave you feeling like this but if you don't make a fuss they won't do a lot. Or perhaps try some alternative therapies to see if anything else can help. I hope you get to the bottom of what's going on soon.

[Dimples in reply to Lynsey83]

Hello Lynsey thanks for your response, yes I had graves disease, over active thyroid with a multi nodular goitre pre surgery, I feel a lot of my health issues have resulted from not having a thyroid and using levothyroxine as a replacement, when you have an annual blood test on the NHS all they test for is TSH, FBC, LFT and Ferritin if they come within the range, the Docs do not want to know, but I will persevere for more tests, thanks again.

[alangardner]

on the info that I have gained from this site , I feel that you need to find out your FULL blood test results ---and ranges from the lab [ they all work on different ranges ] ---- insist on t3/t4/ferretin /follate/b12 etc [you will gain more info from the people on this site] ....this should point you in the right direction ------- please post the blood results on here YOU WILL GET PROPER ADVICE ====== within limits is total and utter bunkum [ ask the dr what the limits are ---including ranges for the lab ---- AND GIVE YOU A PRINT OUT OF THE RESULTS ---- ] believe me this really does work !!!! ...... LoL alan

[Dimples in reply to alangardner]

Hello Alan, thanks for your response, I shall take your advice and get a print out of my blood results, see if I can figure out what's going on, maybe there is hope after all, thanks again.

[Hennerton]

Hi, I had a total thyroidectomy 8 years ago and managed well for a few years on Levo until I had a severe urinary tract infection and even though it eventually cleared, it seemed to knock my whole body. After a while I insisted on a T3 blood test, which showed I was under the reference range and I went to see an endo privately, who agreed to prescribe T3 to be added to my T4. It wasn't brilliant but I sensed T3 was what my body needed and after much experimenting, I now take T3 only. I would love to say it is perfect but I am still trying to get my dose right. It is certainly better than when I was on Levo only. You will probably find you have other vitamin deficiencies, along with your anaemia. They seem to go hand in hand with being hypo, so I now take B12, Folate, B complex, zinc, Vit C, iron, (but not all the time) Vit D in winter and a few others like cranberry and halibut liver oil. The best thing to do is get a full thyroid blood test, as suggested above and post results here. I hope you find your T 3 is low and then you will have a real reason to ask to see an endo who can prescribe it. Your GP will not, I think. Please have hope . We will all help to get you on the right track and good times are coming!

[Dimples in reply to Hennerton]

Hello Hennerton, thanks for your response, I read your case with interest as I have long suspected that my body does not convert the T4 to T3 very well if at all and I understand that a B12 deficiency often occurs following a TT, I dream of sorting these problems out so much, it's a drag, thanks again.

[Moggie]

You might want to look at gut issues - with low iron you would be quite within your rights to ask your GP to refer you to a gastro or you could try giving up wheat for a month (and thats not easy) to see if it makes a difference, I had great results (along with others on here) but am now awaiting a test for gluten intolerance which means you have to eat gluten for the test. The more I read about gut issues the more I realsie that this can go hand in hand with thyroid troubles. Being low in vitamins will usually mean that you having trouble absorbing these from your food and that lends itself to having a gluten problem.

Have a read of this link and see what you think

mindbodygreen.com/0-7482/10...

Moggie x

[Dimples in reply to Moggie]

Hello Moggie thanks for your response, spookily enough I have tried the wheat free diet and I did feel a lot better in many ways, however coeliac blood test came back negative so that was the end of that investigation by the Doc. The low vitamins rings very true though, I have skin issues, have lost a lot of my hair and eyelashes, so a B supplement is the way forward I think. Thanks again.

[Moggie in reply to Dimples]

You do not have to be coeliac to be gluten intolerant. Have a read of this recent, very interesting, Daily Mail article.

dailymail.co.uk/health/arti...

Moggie x

[tilly83 in reply to Moggie]

I've given up wheat for about four months now and feel much better for it.....

[Moggie in reply to tilly83]

Well done you - I cant wait to go gluten free again but I have got to wait until I see the gastro on the 18th Nov and then I would think she will want to do a tube down the throat test (cant remember what they are called). Sometimes I am in so much pain with my stomach that it is making me miserable.

Moggie x

[tilly83 in reply to Moggie]

might be worth looking at low FOD map diet, recipes are easy peasy... I also take aloe vera, probiotics and l-glutamine for gut health. A wonderful soothing drink is cardomon seeds, ripe avocado, almond milk, a few mint leaves, plus some linseeds, blitz and drink...

[Moggie in reply to tilly83]

Have you got a link for that please. The drink sounds delish.

Moggie x

[tilly83 in reply to Moggie]

I don't know it's in one of my many cookbooks... just need at least four cardomoms ( I love them so use lots more - about 12) bash to get out seeds, slice avocado into blender jug with seeds plus linseeds and I add anything else to hand, today it was almond flakes and some mint leaves from our courtyard, add almond or rice milk and blitz, sometimes add dollop of live yoghurt too, it's very addictive and very good for you...prior to this take some aloe vera, l-glutamine powder and probiotics which all help soothe the gut.... fantastic start to day! And slimming!!!!!!!

[Moggie in reply to tilly83]

Thanks - I'll give it a whirl.

Moggie x

[Wired]

Hi Dimples. I don't have any advice to give but just wanted you to know that you are not alone. I'm feeling wretched at the moment too and really want to just feel "normal" so that my day to day life is easier. I hope you get there soon!

[Dimples in reply to Wired]

Hello Wired, thanks for your response, so sorry to hear you are feeling so bad too, what type of symptoms are you experiencing ? and are you under investigations. This thyroid problem seems to be a very fine balancing act mostly its causing havoc with your body and emotions , so glad we can understand and support one another on this site, hope tomorrow will be better for you.

[Heloise]

Hi Dimples, I have been reading hundreds of blogs here for months. My conclusion is that too many doctors are obstinate and prefer to watch their patients deteriorate while withholding certain tests that would reveal the fact that they need hormone supplement, they need the proper hormone supplement and they need enough of the hormone supplement. All of which they ignore. There are a few who are willing to treat the symptoms rather than the test result and you could put the question out there to see if you could make a change in whom you see.

It is egregious that you have all these symptoms which are most certainly due to your thyroid deficiency and they fob you off.

Many have decided to self treat. You can certainly take B12, D3, iron and b vitamins on your own if you need them. You can also access T3 which more than likely would relieve some of your symptoms.

This is a widespread problem so you are not alone.

[2ndtimeround]

When I had my tt 18 yrs ago, for graves I had an extremely large goitre and thyroid levels so high that they couldn't get them to go down, I always remember my go relating it to being pregnant with no baby at the end. My body had gone from one extreme to another it took a good 6 month's for my body and my emotions to get back to normality. I did have an excellent gp then that understood what was happening and once I got on the right levels of levo my levels have more or less remained the same with few problems. Stick with it and keeping annoying the go hope you get it sorted x

[Mumtoboy]

Your levels may be within normal limits but not normal for you- only you know how you feel, not the doctors. I had the same op for the same reasons but luckily I felt well before the op and I know what my thyroid levels were then. Now I am to have roughly the same levels as before, which are borderline hyper according to the lab ranges but not for me. Whenever I phone up for my results I ask for the exact figures and write them down. If they are not what I think they should be or if I'm not feeling ok then I go tell the gp. The nhs is bad at doing full thyroid profiles and quite often just tests TSH which is almost pointless for us.

[Jillymo]

Hi,

You say your on 175 of levothyroxine since the removal of your thyroid am I correct ?

Have you been given any calcitriol or any calcium to make up for the loss of your para thyroid glands ?

I am hypoPARAthyroid so I know how awfull you can feel if your calcium is low.

If i were you when asking for further tests ask them to do your calcium, ask for all results.

Jillymo x

[maggykriti]

Hi, Your dose of thyroid hormone seems very low since you have had a total thyroidectomy. I had a TT in 2002 and now take Erfa thyroid and T3( at a very much higher dose than you have). The thyroid gland produces 9 hormones and other essential things like calcitonin. I believe it is very difficult to regain health unless all the elements of the thyroid gland are replaced with natural dessicated thyroid. After all these hormones produced by the thyroid gland must have a purpose in our bodies even if we don't have knowledge of this.

Many of the symptoms you describe can be related to under treatment of hypothyroidism. It is a miserable experience for you. I do wish you well.

[esme07]

Please ask your Dr to refer you back to an endo and ask for T3. I had a TT now take T3/T4 combo and although things are still not ok I am feeling a lot better than I have done since having my Thyroid removed. You really have to fight for this and it is hard.Please don't give up, keep hassling these people and take as many people to the appointments as possible so they can speak up for you. I have also taken photos of myself before my TT so they can see the difference

[Dimples]

Just wanted to say thank you to all your responses and great advice, I used to be very clued up during my Graves Disease but being Thyroid less and under medicated has left me exhausted and unmotivated, feeling more confident now thanks to all you lovely people x