Needing help, guidance or a new body: Hi all, New... - Thyroid UK

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Needing help, guidance or a new body

a5hl3y2208 profile image
15 Replies

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 :)

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15 Replies

Can you rotate your pic please? As a first step I think you should get hold of a copy of all of your medical records, there may well be some nuggets in there that would explain your poor health. Maximum charge will be £50 but so worth doing, details here:

nhs.uk/chq/Pages/1309.aspx?...

You may be better off seeing a functional medicine doctor but would hold fire until you've received your medical records.

I understand your frustration with increasing weight but unfortunately NHS doctors make lazy assumptions particularly where women and weight are concerned.

Sort out your pic or just type the results out.

a5hl3y2208 profile image
a5hl3y2208 in reply to

Hi Many Thanks for the reply. I have recently moved docs so waiting on then to arrive at the new docs. I work in the new health centre so hoping i can gain access to my records with out paying a charge. Sorry about the picture the results are serum TSH level 0.17 (0.40-500)

serum free T4 level 20.6 (9.0-19.0)

not sure anything else is thyroid related?

in reply to a5hl3y2208

Ashley - you're really better off getting a hard copy that you can keep and, yes, I know it's an expense you can do wihtout especially as you really need more testing done. Look upon it as an investment in your health.

lc1973 profile image
lc1973

Hi Ashley

Sorry you are feeling so rotten. I have read through your post and a couple of things have sprung to mind....i could not see that you have had your FT3 tested? I would have thought with your high FT4 and low TSH that this would have been checked as it is not if results fall into the so called "normal range", this could mean either you are over medicated if your FT3 result is also high over range which can give symptoms similar to low thyroid and even cause weight gain so i've read or it could be you are not converting the levo you are taking very well to FT3? Another couple of things for consideration which have hopefully been considered by your GP if you are trying to conceive... Poly Cystic Ovary Syndrome?...or problems with the sex hormones? Estrogen/Porgesterone ratio, just thinking about the acne you mention? the thirst you mention, i get thirsty too by the way, maybe look into diabetes or adrenal issues? Just thinking aloud really. I'm not medically trained of course, just trying to help with issues i have considered personally in my own quest for wellness!

a5hl3y2208 profile image
a5hl3y2208 in reply to lc1973

many thanks for the reply luckily the nurse practitioner at my new surgery is a close friend and will help me in getting the bloods i have been advised to get. As for the other things mentioned i think the last endo tested my hormones and said everything was "NORMAL" what ever that means and i have had ultra sounds in the past regarding a suspected cyst on my ovaries and there was no sign of anything suspect so the sonographer said.

lc1973 profile image
lc1973 in reply to a5hl3y2208

Its good you have someone you can trust to give you all the info re your tests, just watch out for "normal"...we prefer to see "optimal" for nutrients like Greygoose is suggesting below to get tested. Mine are all normal on paper but far from optimal to be of any help when taking thyroid medication in my situation. I think you definately need to get your FT3 tested and all the nutrients optimal and go from there. My FT3 was rubbish possibly due to lack of conversion of the levo but also probably due to low ferritin, B12, Vit D and folate all of which i need to supplement as they were mostly rock bottom in the "normal" range.

a5hl3y2208 profile image
a5hl3y2208 in reply to lc1973

Getting FT3 certainly seems to be the thing to check hopefully my next lot of blood results will be a lot more informative thank you again for your time and advise

greygoose profile image
greygoose

The only results of any relevance are the TSH and the FT4. The TSH is 0.17, which they call 'low' (0.4 - 5.0), and the FT4 is 20.6 and called 'high' (9.0 - 19.0). All the rest is the usual bumf - sodium, potassium, etc - which are all in range, but low.

Hi Ashley, welcome to the forum - but sorry you need to be here!

So, we have your TSH and FT4, but that isn't even half the story! There are so many more labs that need to be done. Sigh. What can I say. Doctors know nothing about thyroid! So, the only solution - and one which many people on here are driven to, is to get private labs done, with all the necessary tests :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

ferritin

If you get all that lot, it will give a lot better picture of what is actually going on.

Your TSH and FT4 could be perfect, but if you're not converting that T4 to T3, then you are going to be hypo, and are not going to lose weight. Nor will you lose weight if you have nutritional deficiencies. Hence the nutrient tests.

I have to say, though, that the worst thing you can do at the moment is eat low calorie. Hypo weigh-gain has nothing to do with calories, and low-calorie diets have a negative effect on conversion, so make you more hypo.

Exercising also makes you more hypo, because it uses up all your T3, which you cannot easily replace.

I am rather concerned at the idea of taking 'Chinese herbs', too. That is so vague, and could be anything. Some herbs are very bad for the thyroid, so does this Chinese medicine practitioner really know what he's doing? Acupuncture is very relaxing, and good for pain, but I have never found it did anything for my thyroid. If anything, it will stimulate the gland, and it's not a good idea to stimulate a sick gland.

So, let's hope the new endo knows what he's doing. Suggest the list of tests above and see if he will do them - probably won't on the NHS. But, ask anyway.

For your digestion, the problem possibly is that you have low stomach acid - a lot of hypos do. You could try taking half a teaspoon of apple cider vinager in water and honey, before a meal. See if that helps your digestion. I'm sure, too, that on Amazon, you can find probiotics and digestive enzymes cheaper than the ones your holistic therapîst gave you! :)

a5hl3y2208 profile image
a5hl3y2208 in reply to greygoose

Many Thanks for the reply its nice to speak to informative helpful people. I am currently not on a diet as such but trying to just eat a well balanced diet fats, carbs, protein fruits and veggies etc as so not to make my weight worse than it is but my god do i have cravings its like being premenstrual ALL the time and everything i crave is crap. Also i am managing to do one Pilates class a week at the moment but to be honest just waking up and doing a full days work (8.30-6 most days) is a struggle but not wanting to just veg on the sofa either as i feel i am getting bed sores haha. I am going to ask the nurse practitioner at work if she can get these bloods done for me and if not i will pay for private bloods. As for the Chinese medicine practitioner he is a patient of mine at work and a very dear friend of the dentist i work with. He said he has done a diploma of some sort in autoimmune diseases and had more knowledge on the disease than anybody i had previously spoken to. He said he has many patients he has treated successfully but i am not sure on the herbs to be honest out of pure desperation at the moment if somebody said eating dog poo would make me feel better i probably would.

greygoose profile image
greygoose in reply to a5hl3y2208

So, if I were you, I would give up the Plates class for the time being. You need plenty of rest, and you do do a full time job, plus run a house!

I very much doubt if anything you eat will make your weight worse, because it's not about what you eat. Do you crave salty things? If so, give in! It's your adrenals saying they need more salt. You can always sort these things out once you are feeling better.

Are you taking anything else apart from the Chinese herbs? Any vitamins or minerals? You could take some vit C, that might help your adrenals. And by some, I mean 1000 - 5000 mg a day. But, start low, because it might have an effect on your bowels!

We'll talk more about supplementing when you get your tests done. :)

a5hl3y2208 profile image
a5hl3y2208

Also as you refer to usual bumf being low how do i get these to optimal levels?

greygoose profile image
greygoose in reply to a5hl3y2208

Ah, there I have no idea. It's probably not important for the most part. But, you're not cutting out salt, are you? Salt is very important for the adrenals, and yours are pretty stressed at the moment.

a5hl3y2208 profile image
a5hl3y2208 in reply to greygoose

Haha no problem i dont generally cut out salt but i dont add it to anything either would you recommend maybe adding a bit into my diet?

greygoose profile image
greygoose in reply to a5hl3y2208

Yes, I would - although others might disagree. Do you not use it in cooking? You could at least put it on chips! lol

a5hl3y2208 profile image
a5hl3y2208 in reply to greygoose

Chips what are they hahha!! No I don't put it on anything but maybe I will start. My cravings are sweet usually or crisps. Not taking anything other than Chinese herbs, Levi and vit D so will try adding a bit of salt and some vit C and go from there until new bloods. Thanks again :)

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