Thyroid UK

Needing help andguidance

Needing help andguidance

Hi all,

New to the forum basically i am just loosing the will to live with my under active thyroid. I have felt genuinely rubbish for most of my adult life with a number of things including depression, being emotionally super sensitive, awful PMT, being incredibly tired, major acne to face and back, being overweight all these being the most persistent. My mother has an under active thyroid and so when i never lost my puppy and my depression was not just a result of being a hormonal teenager i was tested at the age of 21 and have been on various strengths of levo for the past 8 years. To date at the age of 29 i am on the highest dose of levo being 125mg daily and the heaviest i have ever been at 14st (i am only 5"3) even though i have done various diets eat well and trained at the gym to point i think i have physically burnt my self out. I have gained over 3st in the last 2 years. I am now continuously overwhelmingly fatigued, chronic gut problems inc bloating, constipation and diarrhea , ache every day, constant thrush, constant thirst, have terrible acne and dry skin on my arms and legs, gaining weight at an alarming rate, unable to conceive and just to be honest at my whits end (sobbing uncontrollably whilst writing this). I have seen an endo at the hospital who at the first visit seemed very nice and empathetic and very willing to help. He did bloods upped my meds from 100 to 125mg and put me on a life long course of VIT D. This was almost 12 months ago yet i still feel rubbish unable to do anything physical other than a walk or bit of yoga anything else renders me useless for days. At the time he refereed me to the dietitian dept and after seeing the staff there every couple of weeks for a few months with no weight loss they decided they couldn't help me any further if what i was writing on my diet sheets was true. At my 6 months review with endo i was weighed and told i had gained 12lbs and that was not the idea i was supposed to loose weight (10 points for observations mate that is why i am here!!). I also complained all the time of having an insatiable thirst to the point i was drinking upto 4/5 liters of water a day. His response to this was purely that i am that overweight i must be rolling onto my back and snoring hense the dry mouth (i have never snored in my life) at the end of this consultation i was told all my blood work was fine even though i felt the worst i have in years and that i was being discharged and i only needed to see him again if i was to fall pregnant. Since then in bear desperation i have tried everything from slimming world, paleo, atkins, low GI diets. I have seen a holistic therapist who checked for food sensitivities by merely me holding onto two electrodes that i am basically allergic to all foods, lactose intolerant and unable to digest fats and sugars. They gave me probiotics and digestive enzymes which helped a little but would cost more than my weekly food shop each month to sustain. I am now currently in the process of a referral to a new endo and seeing a traditional Chinese medicine practitioner (for thyroid and infertility complaints) and having weekly Chinese herbs, acupuncture and cupping therapy i have been going for 4 weeks and yet to feel any benefit than a slight decrease in appetite.

So as you can see if you have made it to the end of my gigantic post i have really been through it and any information or advise would be really grateful i am tired of being tired, fat and generally miserable.

I have recently moved doctors and my up to date blood results are in the picture below.

Many Thanks Ashley :)

2 Replies

Has your t3 been tested? If not I suggest you have a private test. I wonder if you're not converting very well and this is like being on an insufficient amount of meds. You may feel better adding a bit of t3 to your levo, trying ndt or being on t3 only. In any case you can't just continue to take a higher dose of levo which is making you hyperthyroid (low tsh, high t4) and failing to make you well.


Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on this test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially calcium, iron or magnesium, these must be at least 4 hours away

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D and gluten connection to autoimmune Hashimoto's too.

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