Thyroid UK
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Still in poor shape with extra problems :o/

Hi all, here I am again (still).

I am almost afraid to look back at my previous posts as I am certain I will be repeating myself. Although that would probably be because so little has changed - for the better that is.

I have pretty much given up seeking medical help (although did have a chest x-ray that showed a shadow that no-one seems to want to follow up on, so I suppose that at some point, I will have to ask for help about that....).

I still don't really know for sure that I have a thyroid problem (THEY say not - i.e. "within range blah blah) but have SO many of the symptoms (which admittedly crossover with m/pause and oestrogen dominance - equally going untreated) that I am sure there must be an issue.

For the records - the most "recent" tests I had show the following (there are many others done last Nov but too many to list):

TSH - (11/14) - 1.97; (04/15) 3.01 <<<<< This was at midday, so probably lower than earlier?

T4 - (11/14) - 13.2

T3 - (02/15) - 4.8 <<<<< This was done by Blue Horizon, they said "normal

Ferritin level has risen from 33 last April, to 63 in November (no idea about now, but I am showing many signs of a deficiency/anemia - especially getting short of breath easily *sigh*

Cholesterol is pretty high, despite - when/if I eat - no "bad" foods.

One of the worst things that is happening is - not what I would call bloating - but a sort of "liquefying" of my torso/abdomen as the day progresses. I can start fine, almost able to see some muscle definition (I do 100 crunches and 20 "roll-ups" per day - I DO believe it is possible to target-"strengthen", if not "reduce"). Does anyone else have this happen to them?

As I leave my general targetted activity until later in the day, this is causing me to not even do it then - I just CAN NOT cope with the wobbling, tightness and awful awful feeling of restriction in the clothes I wear (another side issue being the huge knockers I now have........... - and people PAY for such things??????)

One of the more worrying things that I have read is that this kind of edema can be caused by congestive heart failure - it was also was the only symptom that my friend had before she died of metastatic liver cancer, so I do panic a little when I think of how that happened to her. I have too many problems with my GP Practice to go to them and ask, so yes, here I am again lovelies :o)

I know I am catastrophising (?) - so if anyone has any ideas, suggestions, alternative reasons or advice, it would be gratefully received.


Oh, I am also just about to buy NDT (Thyroid-S or Thiroyd) but wondered if there would be any point - or if it could actually do more harm than good - without a diagnosis (which is NEVER going to happen :o/ ). Any help with advice re. that too would be so welcome.


9 Replies

Dumbblonde, your thyroid results from Nov 14 didn't really indicate a thyroid problem but things change so an up to date thyroid test would be helpful. TSH was a gnat's higher than euthyroid, I can't tell what FT4 is without the range, but FT4 4.8 was good.

It shouldn't be damaging to try a little NDT. If it makes you feel better, it shows you need it. It's unlikely to do you harm if you make sure FT3 remains within range by testing periodically until you stabilise dose. Temporary overmedication isn't harmful but long term overmedication increases risks of atrial fibrillation and osteoporosis.

Usual advice is to start with half a grain (30-32.5mg) and increase in half grain increments every two weeks until symptoms resolve or on 2 grains which should be held for 6 weeks and levels tested before increasing further. It would be better for you to hold at 1 grain for 6 weeks and then test as you haven't been taking thyroid replacement.

If oedema is thyroid related thyroid medication may help in time and I've seen people report improvement after adopting a 100% gluten-free diet.

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Thank you Clutter for your very helpful reply :o)

Where the TSH is concerned, I thought that anything over 1 was not good, so over 3 (having possibly fallen from earlier in the day) was definitely not good? Have I got that wrong....?

The range for the T4 was 9 -19, so I guess that particular reading was about halfway in range.

Given the way I feel, I really did think that thyroid was playing a part - and combined with what I am thinking is "weak digestion", I'm not really sure just how to help myself; I do hope that I'm not going to make matters worse with NDT but feel reassured by what you have said.



DB, TSH 1.0 is euthyroid, >2 may be a sign thyroid is beginning to struggle, >3 it is struggling. FT4 is just under half way through range which is a little low. NDT may help but you'll need to try it for 3 months, it isn't an instant fix. I don't think it will make things worse if you take it slowly and increase gradually.

If, by weak digestion, you mean gassy, bloated or uncomfortable after eating, it may be due to low stomach acid. Try Betaine Pepsin or raw apple cider vinegar in honey sweetened water before meals. They raise stomach acid which aids digestion.

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Thanks again Clutter - very helpful :o) - although am beginning to think I might not actually need the NDT......

I have totally destroyed my ability to digest foods normally by my very very disordered eating patterns (throughout most of my life), on a couple of occasion stopping eating altogether due to horrible life events and poor mental health :o/ I am very close to doing so again, even though I know I shan't drop to around eight and a half stone this time *sigh* I just think my body doesn't really process food well anymore and yes, I do think that I need acid/enzymes that are no longer present or working properly for me. I seem to derive no benefit from food as it (pardon me) doesn't stay with me for long enough.......and yet, there is this terrible bloating and fluid retention that literally comes form nowhere as it happens even if I eat nothing - hence my worry that it may connected to something else altogether, although I was "OK" with thinking it was somehow linked to thyroid as I hoped to be able to take steps with self-medicating.



DB, if food is running through you, you need to see your GP to rule out infection or parasites which may also cause the bloating and fluid. I don't think disordered eating would be responsible. That's more likely to cause constipation.


HI Clutter - yes indeed I should probably see a Dr. However, I just cannot bring myself to. The last time I saw one (young, female - who I last saw a couple of years ago ) - for blood test results following a high BP reading or three - she caught me off guard by asking about my now deceased horse and, simply because I got upset over this, it was recorded on my notes that I may possibly be classed as having a "Personality Disorder" (this, amongst other things, is the subject of a complaint with the Practice that may go as far as a Parliamentary Ombudsman).

The only way that I have for dealing with the physical and mental issues I have with food is to almost stop eating - which I know compounds the thyroid and indeed general well-being situation. Having said that, I picked up some probiotics yesterday and will now stop drinking alkaline water, which I was told was a good thing but probably also reduces stomach acid, and try to be consistent with ACV (but I struggle with that).

I tried to stop being a vegetarian but my body and mind couldn't cope, so back to lentils and courgette noodles, if anything......


(Sorry for any repetition of previous post content....)



DB, A GP's opinion of personality disorder is not a diagnosis. Even if you do have a personality disorder it doesn't preclude you having or developing physical illnesses.

I think you need to overcome your reluctance to see a GP. Can you not see a different GP at the practice or change practice?

In the meantime ask your pharmacist for advice.



It rather seems that (they think) that it does. I am seen to be rather invincible or maybe the next stage in human evolution even as I cannot POSSIBLY ever have any kind of physical health worries (they say.....).

I have done the rounds with the GPs at this Practice and that is why I have accessed my notes. A long-ago dx of depression (to which I am predisposed - due to unalterable factors) has tailgated me over the years - even though they don't (or can't, truth be told) help me with it; even the referral to the Endo included mention of it and he brought it up when I saw him - his locum at the follow-up was even worse. Besides, mental well-being can be affected by physical conditions, can't it - unless I am ground-breaking with that too and that my physical and mental health ARE mutually exclusive.

I'm rambling and ranting, I do apologise, but I am stuck in such a horrible loop, it is hard to know what to do any more.



DB, You might start by changing GP practice if you haven't found an empathetic GP at yours.

I've had bipolar depression since my teens. The 'label' has not been a barrier to getting good care when I've needed it. It is on my endo notes after discussing medical history with endo because other conditions and medication are relevant to thyroid treatment. There has never been a suggestion that my problems adjusting to Levothyroxine were in my head although there was no help in determining what the problem was until I self medicated T4+T3 and made myself well. After agreeing there was significant improvement in my health the endo prescribed T4+T3 combination.


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