Advise ...pointers in dealing with gp who is treating my symptoms like a joke.

[Gemstone88]

Hi everyone, hoping to gain some advise on how to tackle the problems i have been faceing regarding my gp...i have a history of misscarriage...i have been suffering with horrendous symptoms for the last dew years which i feel are getting steadily worse....always freezing...breathless...nausea...palpitations....ibs....extreme fatigue...migraine...vertigo...no periods for long periods of time....horrific skin issues....dizzyness...choking feeling etc i am convinced that i have a thyroid or hormonal issue but my gp is absolutely adament that i have not, i know that i am anemic and am deficient in vit d which i am on tablets for i found this out through requesting a copy of my blood tests as my gp had never mentioned this or i probably still wouldn't know, since looking at them i see my vit b12 is also very low in the normal range....my tsh normal range is between 0.2- 4.5 mu/l my results were 2.3 then 1.8...my free t4 normal range is 9-21pmol/l my results came back at 11 then 10 is she right in saying that this is perfect? I am so confused and feel terribly ill any advise would be greatly appreciated...i was referred to an endo but when i went to the app the professor i was supposed to see was not there and i seen an extremely rude diabetes specialist who was uninterested at best! Should i be pushing for more tests or specific tests? I am so desperate now i am considering saving up to be seen privately but am afraid at the lack of knowledge i have getting me the same results...thanks in advance x

[ollie7horse]

Hi

Do you have autoimmune desease in your family? If so request pernicious anaemia antibodies test

What was you b12 level anything below 250 is far too low

Lastly the thyroid peeps on here will decifer thyroid levels but I think they should test tsh t4 and t3

IIf bit d is low there's a chart on google that will tell you dose and how long to medicate by your blood result

HHope this helps

Ollie

[catrich]

Hello - firstly you've come to the right place for help. Without this forum I would very likely still be feeling as you do now. There will be others along soon with their advice but in the meantime...

It's perfectly possible to have 'normal' TSH which when accompanied by low in range T4 and/or T3 can be highly suggestive of problems. My TSH levels were always normal -" perfect" while my T4 slid down and down and bottomed out below range with my t3 following suit.

As your GP is less than disinterested it would be a very good idea to have a Blue Horizon blood test - there are various thyroid ones available. Your t3 needs to be tested as do your thyroid antibodies.

I agree with you that saving up to see a private endo at this stage is no guarantee of a sympathetic and helpful hearing. If you had blood test results and the explanation of people here you would feel more sure of what you were saying.

B12 and VitD are essential - decent supplementation might be more effective if you had injections first for b12 and a sufficiently high dose for vitd as it takes many months for levels to rise. There are people here who self inject if GP declines to help.

Might also be a good idea to find another GP. Low vitd and b12 are serious deficiencies that should be acted upon.

[Naomi8]

Can you change to another GP in the practise?Can you explain what happened at the endo appointment & see if they will book you in again with the thyroid endo you need to see?

I was booked in to see the endo that prescribed T3,but was seen by a locum endo who was hopeless.Thyroid Uk have a list of endos-don't go blind if you do go privately-could be a waste of time & money & very demoralising.

[Hoxo]

What was your B12? A low result with symptoms should ring alarm bells. The guidelines state that low B12 but with symptoms should be treated. You can get more info on PAS forum. Also your free T4 is low. When my levels got down to 10 I was feeling very very unwell.

[startagaingirl]

Hi - it is entirely possible that you have a thyroid problem as just "in range" is not perfect at all but typically gps don't recognise this. Nutrient deficiencies also have a major impact. If you get copies of all your test results from your gps receptionist and post them here including ranges as labs vary (the numbers in brackets after result), then we will be able to give more specific advice to you.

The important numbers to look for are TSH, free t3, free t4, vit d, folate, ferritin, TpoAb and TgAb. If you don't have any of these or your GP won't test them, private testing is available though blue horizons or medichecks. There are then plenty of experts here who can advise on the results much better than most endos and for free! Altogether much cheaper and more effective than a private endo.

Good luck,

Gillian xx

[Glynisrose]

Sack him and get another GP? I would if he treated me as a joke. Cause that'swhat hes doing treating you as a joke.

[eeng]

It seems to me that you could have secondary or central hypothyroid. Your FT4 is low and falling but your pituitary, which should be producing more TSH to kick your thyroid into action, isn't doing its job. In your place I would buy in some NDT or Levothyroxine and self medicate to see if that helps, unless you can find a really good, knowledgeable endocrinologist, who specialises in thyroid and pituitary disorders. You say you have had miscarriages - have you ever had a successful pregnancy and if so did you manage to breastfeed? The pituitary controls a hormone called prolactin, which I believe is something to do with breast feeding, and the tests for pituitary disfunction include a test of your prolactin levels. You could Google pituitary problems and see what the symptoms are.

[Gambit62]

Please take a look at the PASoc forum in relation to B12 - you are not alone.

Please avoid the temptation to supplement though until you have exhausted the possibilities of a diagnosis from your GP as supplementing makes it very difficult towards impossible to interpret any of the tests that are used to diagnose a B12 deficiency

healthunlocked.com/pasoc

[hellybaybee]

B12 and hypothyroid symptoms r very similar- check this... test doesn't look awful but not perfect and symptoms are what matters... sorry this is short, at work... really would suggest looking at b12

[hellybaybee in reply to hellybaybee]

Oh also u def need ur T3 tested

[Lily905]

Change your gp asap.

I spent 18 months complaining to my gp about my thyroid because I knew it had gone wrong & was under active. All throid tests came back with in the "normal" range. She sent me for a scan to shut me up. The scan showed I needed my thyroid removed ASAP before the problem contained in my thyroid spread.

Listen to your own intuition. You know your body. Change your gp / surgery ASAP. There is a lot of tests they can do to identify what's wrong with you. The gp needs to see you at your worst so don't self medicate. I hope you find a new gp with some empathy & get yourself sorted soon.

[Gemstone88]

Hi everyone thank you all so much for your replies imthey have all reinforced what i already suspected, yes i have had 2 previous pregnancies that resulted in bouncing babies i was high risk throughout both and struggled to breast feed (i didn't seem to produce enough milk) i have changed gp in practice last year but my problem seems to be that they all go by the original information that has been written by my old gp who treated me like a complete nut and hypochondriac she actually continually sent me away with anti depressants and omeprozole and basically told me to get over it..i never took the anti depressants as i am adamant this is not the problem i am having, i was also told to cut out gluten which i have done and that i have possibly pcos, no goiter but i feel like there is a tightness or pressure in my throat and the breathlessness is horrific almost like i can't pull in enough air...they have point blank refused to retest my vit d as they said it is an expensive test and my levels are not on my current results i know my last b12 result was 400 and had fallen at every test, fibromyalgia...fnd....chronic fatigue syndrome etc are all things she has told me i have but i don't agree i find it so upsetting that she would rather diagnose me with a multitude of different things than accept the possibility that i could be right and it could all be the same thing...i wouldn't wish feeling like this on anyone and to be told to learn to get on with it is just horrid...thanks everyone i will be calling them up again and demanding more bloods if she refuses i will look into paying for them myself so i can try and get a full or clearer picture X

[thyr01d in reply to Gemstone88]

Hello again Gemstone88, just read your second post/answer and think it might help you to know that I made progress with my GP, who like yours diagnosed fibromyalgia, depression, ME/CFS etc, by writing to her. The letter, as tactfully as poss, reminded her that she would be responsible for the costs of any healthcare I needed as a result of failing to treat my ill-health. (My blood tests results looked fine but problems seems to be conversion of T3 to T4 or an absorption problem, now being treated by an endcrinologist, so not very different from you).

It might also be well worth your while contacting PALS, Patients (Advisory?), Liason Service to see if they can open up good communication between you and your GP.

Very best of luck - and it

[SlowDragon Administrator]

Link for private testing

thyroiduk.org.uk/tuk/testin...

Medichecks have offer on at moment for Thyroid Uk. "Thyroid ultra vit" will test B12, Folate, ferritin and vit D as well as full Thyroid test

[HLAB35]

I totally agree with reallyfedup123 - completely nailed it.

If I suspected central / pituitary thyroid I'd call the practice and just ask the receptionist if they could recommend another GP who knew about it, because I wouldn't want to 'waste their or my time' if it wasn't something they had any knowledge of.

If you get landed with the same GP as before ask them to give you an evidence-based reason why they are so certain that you haven't got central / pituitary thyroid.

A lot of your symptoms do sound as though they come from poor gut absorption. Doctors, by law, have to say that supplements are not necessary if we're having a 'healthy balanced diet' - no chance of them acknowledging soon that western diets are making us all malnourished particularly with regard to an over reliance on fortified grain consumption. Cutting out wheat for a bit is an option if going completely gluten free seems like too much in one go - just make sure you're taking B-vitamins if you go wheat / gluten free as breads are often fortified with thiamine, riboflavin and folate and we need our B's for metabolism and heart health.

[Gemstone88]

Thank you i really appreciate that, after digging through my previous results i know that my last four t4 tests results have dropped everytime starting at 13 then 12 then 11 with the last one being 10 my b12 had also dropped again to just above 300 with my serum folate being 4 within a range of 2.8 - 20 iron levels have been steadily under 5 for the last 3 years with a range of 10-28 so all the iron tablets are not making a difference, the results etc are all new to me as i had previously trusted my gp to tell me if anything was iffy, can't thank you all enough for your replies really needed it after my disaster app with docter diabetes! Hopefully i can make my gp listen if i can relay some of the info you have all given me! X

[endomad]

i totally agree with everyone else, just so you know how useless and disinterested gp's are i became seriously ill almost narcoleptic and house bound, the pain nearly drove me insane. My dr kept telling me my thyroid worked perfectly, when in fact it had been removed 7 years ago!!! i kept reminding him of that and he said 'well your tests are fine' like you i scraped in at bottom of t4 my t3 was bottom and tsh ended up at 5 which is still considered ok.

No exaggeration i felt like i was dying...i took matters into my own hands and now getting better, left to my gp and 2 private drs i would prob be dead. It is your health, read up, get your vitamins at good levels, private test if you can but i would say you are hypo. I was stunned to find out a profession i had never needed to use but trusted implicitly was absolutely useless and unless i was interested in anti depressants they were not interested.

You are in the right place, you will get better xx

p.s my dr apologised to me after seeing how miraculously well i became with thyroid replacement! i changed dr not much better but they are happy to do all my testing, do not accept lazy doctor, heal yourself x

[leoopard in reply to endomad]

Actually your GP failed to follow NICE guidelines. They state that once treatment commences the dose should be raised until the patient feels symptomatically well, provided TSH lies within the treatment range. That means at or below 5 AND FEELING ASYMPTOMATIC. You have a case a clear negliegence if you can afford the lawyer.

[thyr01d]

Hi Gemstone, I am sorry to read how ill you feel.

I don't know nearly as much as others on this site but I'd suggest posting again asking for advice. Others will tell you which vitamins and minerals etc need to be at what levels for thyroid function - for instance ferritin, folate, D and B12, we also need selenium.

There are also many things that interfere with thyroid function like iodine, fluoride and chlorine (both often in water), the brassica.

Others really will advise much better than I but perhaps this will point you in the right direction.