Paranoid or what?: Hi, I need help keeping my... - Thyroid UK

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Paranoid or what?

Joant24 profile image
Joant24

Hi, I need help keeping my sanity. Long story short, throughout most of lockdown I was treated over zoom for UTIs by a lovely consultant microbiologist outcome sadly is all the usual antibiotics are now useless. The GP in an act of desperation referred me to an endocrinologist as I'd mentioned in hindsight that when in my younger day I had an overactive thyroid one of the symptoms was regular UTIs and today I had a telephone conversation with him. I've posted the results I did last week so he'd have an up to date idea of where I am.

He said they were fine, all normal and keep checking every 6 months. I did explain the tiredness, flat lifeless feeling, UTIs, cold, hot flushes etc. I won't bore you with the list you all know anyway. I pointed out the lowish T3 and low T4 and he said that it didn't mean anything if the TSH is normal, they don't look at those results alone (T3 & T4). I should go back to my GP and get some other diagnosis, maybe my vitamins are low was another of his suggestions.

I need some brutal honesty as to whether I'm over reacting with blaming my thyroid for all my issues and I know that I've asked this before but my sanity really is slipping and whilst I know I've not been depressed before I feel like I'm getting to go down that road. I was in floods of tears by the end of the conversation and can only imagine the letter he sends to my GP,

If I went privately would that make a difference to the conversation or would they say much the same?

On a more positive note I started a long course of Uralix herbal tablets and whilst they haven't cleared up my bladder issues completely it's much more manageable and comfortable, bearing in mind the course is for 9 months and I'm on month 4. Sadly it's it an expensive option but I was more than desperate.

Thanks for being there when people feel like this, it's good to have an objective point of view.

17 Replies
SlowDragon profile image
SlowDragonAdministrator

Previous posts show you have Hashimoto’s….lowish vitamins and thyroid obviously struggling

Important to get vitamins optimal

Are you on absolutely strictly gluten free diet

If not, get coeliac blood test done BEFORE trialing strictly gluten free

UTI is often linked to being hypothyroid

But most medics only look at TSH.

Joant24 profile image
Joant24 in reply to SlowDragon

I’ll get the gluten test done ASAP. Taking the usual vitamins D, K2, B12 with folate and probiotics. How much of a difference to symptoms does going gluten free make, out of interest? To help with UTIs I’ve given up sugary foods, tea & coffee and alcohol and previously went lactose free so I can be strong when needed and possibly going gluten free is within my capabilities. However I am running out of life’s little treats I’m beginning to feel beaten, so much so I’m about to have a glass of wine! Oh and to add insult to injury I’ve not lost even 1lb in weight 😂 Thanks for the speedy reply.

SlowDragon profile image
SlowDragonAdministrator in reply to Joant24

Personally I only need to be strictly gluten and soya free

Now I am correctly medicated I can drink tea, coffee, alcohol etc etc

It’s trial and error what suits each person

The only way to rule different foods in or out it to cut them out one at a time

And what’s your own personal triggers…like many members I had zero gut symptoms….was astonished that I was gluten intolerant. For myself it was astonishing improvement almost immediately and ongoing . Others find its more of a slow gradual reduction in symptoms. Often TPO antibodies slowly reduce

Pity I wasted over 20 years, before joining this forum and seeing just how common food intolerances are with Hashimoto’s.

Repeated UTI is a hypothyroid symptom.

Joant24 profile image
Joant24 in reply to SlowDragon

Thank you. Interesting you say you had no idea you were GI, I didn’t think I have any except maybe for the bloating and put constipation down to sluggish thyroid. My Dad had Ulcerative colitis and wonder if he’d been gluten intolerant or some such thing? I thought I might try a home test kit for the gluten intolerance and if positive move on to the GP. Any thoughts?

SlowDragon profile image
SlowDragonAdministrator in reply to Joant24

Yes…if you would rather not ask GP..the home testing for coeliac is reliable

But testing negative for coeliac doesn’t rule out gluten intolerance

Joant24 profile image
Joant24 in reply to SlowDragon

Okie dokie

SeasideSusie profile image
SeasideSusieAdministrator

Joant24

First question to ask is did you do the test the way we advise, ie

* Test no later than 9am

* Nothing to eat or drink except water before the test

* Last dose of Levo 24 hours before test

* No Biotin or B Complex for 7 days before the test

If so then it's easy to see that your FT4 and FT3 results are shocking. FT4 has scraped in at 6% through range and your FT4 is just 21.62% through range. Blind Freddy can see that you are undermedicated.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 and send it to the endo, along with a list of your symptoms, asking him to respect the opinion of the UK's leading endocrinologist and give you an increase in your dose of Levo. In fact, ifyour GP is onside you don't need the endo, your GP could increase your Levo, my GP did years ago when I saw a total idiot of an endo who insisted on reducing my dose until my suppressed TSH scraped into range but in doing so he made my FT3 plummet to the very bottom of the range making me so ill.

Joant24 profile image
Joant24 in reply to SeasideSusie

Thanks for info. I’m not on any medication and he was adamant that I’d not get any until my TSH was above 5. I did all the right timings etc for my blood test and stopped those including biotin.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Joant24

Sorry, I didn't check your profile or I'd have seen that you've been having a hard time with this.

Normally you wouldn't get a diagnosis until TSH went over range with raised antibodies but as your FT4 is so very close to the bottom of the range I honestly can't see why your GP wont give you a trial of Levo, say 50mcg and trial for 3-6 months. Can you see a different GP, emphasise how many years this has been going on, that your TSH never seems to get high enough but your FT4 is now right at the bottom of the range and how all this has affected your life and it's getting worse.

Hashi's is where the immune system attacks and gradually destroys the thyroid. TSH isn't a thyroid hormone, it's a pituitary hormone, it's FT4 and FT3 which are the thyroid hormones and currently your thyroid is hardly producing any T4 regardless of the fact that your TSH is in range, obviously the feedback loop between the pituitary and the thyroid isn't working properly because with an FT4 level of 12.6 (12-22) one would expect to see the TSH much higher than yours. It almost makes one want to tell the GP you'll source your own Levo and self medicate.

Joant24 profile image
Joant24 in reply to SeasideSusie

My GP is back in on Monday and I’ll have a chat with her and maybe can talk her into a trial. I was thinking of self medicating myself to be honest. I was foolishly hoping the endo might think along the same lines as you. I’m not even at my wits end anymore just feel beaten. I think they are putting me down as obsessed with my thyroid and I’m not sure how to deal with that one. I shall use your feedback loop example when I speak to the GP, I like how clearly you explained it. Thank you so much.

I don’t think any doctor would necessarily treat you with thyroxine with those results. You’re borderline low but your TSH would suggest this much hormone is enough for you.

What’s your height and weight?

It’s most likely the doctor would Re-test in 6 weeks to see how you’re faring. Even if you were outside ref ranges the NHS protocol most GPs follow is to check again in 6 weeks and if two tests show thyroid levels out of range then to treat.

You don’t want to take thyroxine unnecessarily as there could well be something else at play here.

Would be useful to check thyroid antibodies as well next time on top of the 3 tests you’ve had already.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Wired123

Would be useful to check thyroid antibodies as well next time on top of the 3 tests you’ve had already.

She doesn't need to, she has results showing raised antibodies which confirm Hashi's, no point in repeating them, even if they show lower on another test she'll still have Hashi's, antibodies fluctuate but the Hashi's doesn't go away.

Joant24 profile image
Joant24 in reply to SeasideSusie

Thanks.

Joant24 profile image
Joant24 in reply to Wired123

I’ve already done antibodies and they are there, I’m not sure was high is classed at but they were 200+. There’s family history on both sides, my mum in particular. Also had over active thyroid in my 20s so it’s likely it’s thyroid related but I will be talking to GP about how I feel and won’t let her fob me off without a plan of some kind. I’m 5’ 6” and 10st, not over weight I know but then when I was over active I wasn’t wired and anxious etc, I spent most of my 20s asleep with exhaustion 😂.

You might find this link of interest :

healthunlocked.com/thyroidu...

humanbean profile image
humanbean in reply to humanbean

P.s. I think you might have central hypothyroidism, which is a problem in which your body can't produce enough TSH for your needs.

For your endo to be so relaxed about such low Free T4 and Free T3 is sadistic, uncaring and appalling, but is absolutely typical of the medical profession on this subject.

Joant24 profile image
Joant24 in reply to humanbean

Thanks for your input, I’ve got antibodies so don’t think I’ve the central hypothyroidism, although in my wanderings on google I did think along similar lines. I asked the endo if the low T4 and lowish T3 might be something to think about but he just said we only look at the whole picture with the TSH. I obviously drew the short straw with that one!

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