Gp advice before seeing endo: Hi everyone... - Thyroid UK

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Gp advice before seeing endo

birkie profile image
71 Replies

Hi everyone 🌹

Just wanted to post this to show just how idiotic gps can be in relation to thyroid disease, firstly my gp decrease my T3 medication won't bore you with the details only saying I was over medicated, I wasn't, I then went on T4 for a 7 week trial 🤷‍♀️ after some discussion with the gp she as referred me to an endocrinologist, the appointment is for Aug, I spoke with my gp in regards to the T4 I'm taking giving me bad side affects, I asked what the plan would be now as I can't take the T4 for the next 6 weeks, her response " just decrease the T4 from 50mg to 25mg 🙄 ( my last bloods showed I'm still hypo TSH.. 6.45) no T3 or T4 done😠.. I asked if it was acceptable for me to decrease the thyroid medication to that extent when I was already hypo? Can I not just go back on T3? She said only the endo can do the medication change so ask when you see the endo in aug🤷‍♀️... If I were a diabetic would my gp be OK with me decreasing my insulin, i think not! But hey you only have thyroid issues so it don't count, I'm gobsmacked she as given me this advice 😲

71 Replies
RedApple profile image
RedAppleAdministrator

birkie, it's appalling isn't it. We have a proven need to 'life supporting' medication, and yet they don't have any understanding at all of how significant this is. I can't begin to count the number of times I've wanted to 'deactivate' the thyroid of a medic, for as long as it takes for them to experience what it's like.

birkie profile image
birkie in reply to RedApple

Hi🌹

Yes I would love to deactivate my GPS and some endocrinologists thyroid for 6 months see how they like it😠.. I have 2 friends who are diabetic they see their GPS frequently and are treated with dignity and respect. My friends can believe how badly treated I am in regards to my thyroid condition 😔 I've just told one friend about the advice my gp as just given me in relation to my T4, it was her who said my gp would never allow me to decrease my insulin or be on a drug that gives me bad side effects. I told her yes I'd probably get treated way better if I had diabetes 🤦‍♀️

SlowDragon profile image
SlowDragonAdministrator

Are you not currently taking any T3

You obviously can live with no thyroid on 25mcg dose levothyroxine

Who stopped the T3 …..endocrinologist or GP

Do you have any T3 left you can take

birkie profile image
birkie in reply to SlowDragon

Hi🌹

I posted on her why gp along with the endo first decrease my t3.. From 40mg to 30mg on these results ( TSH.. 0.05..T3..6.6) 🤦‍♀️ as I said I went along with her as she is blaming all my symptoms on T3.. ( actually the symptoms are of primary hyperparathyroidism) so I called her bluff and came off T3 altogether going on T4 for a 6 week trial (all symptoms remain because they have nothing to do with thyroid meds).. 7 wk on T4 my TSH is still hypo.. I have bad side effects to it hence me saying I'd only go on it for 6 weeks, now the gp is lost and as referred me to the endo who decrease my t3, 🤦‍♀️as I said she will not put me back on T3 without the endocrinologists advice and seeing as I've an appointment in Aug she's just told me to have a word with the endo then🤷‍♀️ I have no T3 left so doing the 25mg T4, but I can't see that doing this will make any difference to my side effects, still got bad bowle pain loose bowels, headache, I hate the stuff I was like this in 2019 not absorbing, my T3 was on the floor, my last T3 result after the decrease of T3 was 1.5..so goodness knows what it is now😠😠

Guost profile image
Guost in reply to birkie

Hi you should book a private appointment for now. Take your blood results and then she or he will write to your doctor and tell them what to do. I did that , my Endo put me on liquid tgyroxine and I’m starting to feel better. I too have an NHS appointment in August.

birkie profile image
birkie in reply to Guost

Hi🌹

With everything that's happened to me from 2018 ( diagnosis of hyperthyroidism) later graves, then in 2020 with 2 endocrinologist writing saying I probably have primary hyperparathyroidism, I feel everything is just messed up, my gp knows I have colitis and are lactose intolorent, but the first lot of T4 they put me on contained LACTOSE!! I started to suffer the side effects, gp was unsympathetic saying I'd to just persist with them, it was this site that brought my attention to this T4 containing lactose 👍 so I rang my gp to inform him.. Then was put on T4 teva which contains mannitol a filler that affects me, its been a real nightmare, I don't have much faith in seeing this endo, as soon as this weekend is over I'm contacting my referrals manager to see if this appointment can be brought forward, both myself and my son are looking at private appointments if this appointment can't be moved,.. 👍 And its a real bummer I'm stuck at home sitting near the bathroom because I dare not go out, all my friends are at jubilee party's 😭😭😭

Jajda profile image
Jajda in reply to birkie

if your gp can switch your medication at first place why she can't change it back ? How to trust gp who if you as the patient/ know more and yet - as a patient you are in hands of ignorant half educated professional. You know that waiting for specialist for months is not wise not helping not healthy ... what abt to try to talk to the endocrinologist office explain situation get earlier appointment or at least on cancellation list .. consider Urgent care visit ... call help line for advice .... good luck 🤞

birkie profile image
birkie in reply to Jajda

Can't change my meds as gp took advice from endo and she decreased me, 🤦‍♀️then I said I would go on T4 for a 6wk trial as my surgery are playing about with me... They say gp can change T4 but not T3.. I'm just waiting for this holiday weekend to finish then I'm getting in touch with the referral manager to see if I can get an earlier appointment, it's a flipping nightmare 😭

tattybogle profile image
tattybogle in reply to SlowDragon

endo reduced T3 from: 40mg T3 ........................TSH 0.05 / T3 6.6

8wks on 30mg T3.... TSH 23.47 / T3 1.5 / T4 2.50

birkie stopped T3 to prove it wasn't T3 causing symptoms ...

7wks on 50mcg T4 (teva)... TSH 6.4

birkie profile image
birkie in reply to tattybogle

Gp didn't do T3 or T4 so I don't know if the T4 did anything to move my T3 as I said the last time I was on T4 teva I had all the bad side affects and my T3 was dire always at the bottom end endo said I was probably not absorbing or converting so she put me on T3.. I was OK on T3 until my PTH and calcium went over range and the endo wrote saying I now probably have primary hyperparathiyroidism, I can't stay on this T4 teva as the side affects cause my colitis to return, T4 teva contains mannitol the T3 teva does not.. Like 2019 the longer I'm on the T4 teva the less it will be absorbed giving me the same results as they did in 2019, I had 6 months of sheer hell in 2019😩

SlowDragon profile image
SlowDragonAdministrator

Try Aristo or Glenmark levothyroxine

Both are lactose free and no mannitol either (unlike Teva)

Aristo is 100mcg only

Suggest cutting Aristo in half initially to get 50mcg

Aristo ingredients

thyroiduk.org/if-you-are-hy...

Glenmark is new …..but should be available

helvella has list of ingredients on profile page

GP needs to specify brand on prescription

Make another appointment…..be as much of a nuisance as possible

Request they test vitamin D, folate, B12 and ferritin too

birkie profile image
birkie in reply to SlowDragon

I'm going to ask this endo if I can have the medication that contains no lactose or mannitol I think it's tirostint could be the same meds you have mentioned, they come in gel capsules or the liquid form👍 I'm not adverse to trying T4 again but not teva or anything that contains lactose or mannitol, vitamin D was done on 14th March 2022 it was 42..surgery refused to do T4, T3, B12 and all vitamins and minerals I requested them and they were turned down by my surgery, I've not had my vits/ minerals done for over 12 months and can't see any B12 ever being done🤷‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

Glenmark and Aristo are lactose free and mannitol free

Suggest you try splitting levothyroxine dose into two smaller doses, waking and bedtime

Several members have had enormous success with liquid levothyroxine

In part perhaps because liquid dose is usually split into two or three smaller doses

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

I don’t think anyone has managed to get Tirosint gels in U.K.

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

14th March 2022 it was 42..surgery refused to do T4, T3, B12 and all vitamins and minerals

Email GP and practice manager

Request in writing that they organise test of folate, B12 and ferritin plus Ft4 and Ft3 as per guidelines attached in readiness for your upcoming appointment with endocrinologist

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

How much vitamin D are you currently taking

Is it vitamin D mouth spray

birkie profile image
birkie in reply to SlowDragon

Yes vit D is better you with k2, 3000i the gp rang with my results but only gave me TSH... When I asked what my T3, T4 were and vits/minerals B12 she just said my bloods were refused only TSH was done, 😠.. She actually told me.. Wait for it.... T3, T4 can only be done by an endo!!, she's lying as I had T3, T4 TSH done after the decrease of the T3.. 🤷‍♀️ Also I should mention the nurse who did the draw told me the surgery have a new policy on bloodwork now in that it goes to be evaluated as to whether it needs done or not, she told me it can be refused 🤔 mine apparently was... I've been trying to get an appointment with our practice manager sent her an e mail on 23rd March no response, I've been told she's not in or working from home.. Its a bloody conspiracy, I've tried several times at reception to find out how I can get an appointment but no luck.. I won't stop trying tho.. And I will request I have bloods done a full pannle before I go to the endo appointment, thanks 🌹🌹

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

Yes vit D is better you with k2, 3000iu

Are you taking one spray or three sprays per day?

One spray only = 1000iu

birkie profile image
birkie in reply to SlowDragon

I spread it out one 2 hours after thyroid meds then 2 pumps in afternoon, but I have been told the body will keep vitamin D down in primary hyperparathiyroidism to protect you from the calcium, my calcium as remained in the top range going over also.. I truly feel awful I'm weeing for England and getting so sick of not getting any sleep because of it.. 😭

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

Have you had 24 hour urine collection test for polyuria

If not request endocrinologist organise test

webmd.com/diabetes/polyuria...

birkie profile image
birkie in reply to SlowDragon

Going to request that slowdragon as the one done in July 2020 I was very sick, vomiting very dehydrated I should have just refused to do it, but stupidly I though seeing how unwell I felt something would show up🤦‍♀️ the endo wrote saying their was not enough urine volume to determine primary hyperparathiyroidism and dismissed me to another endo at Newcastle who did the Aug bloods.. She should have re done the test I think...... By the way this is the endo I'm seeing in Aug... 🤦‍♀️😤😤😤

Espeegee profile image
Espeegee in reply to SlowDragon

Good suggestion but she has to wait until August to see him/her. NHS, envy of the world, not.

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

Email endocrinologist secretary and inform endocrinologist

TSH is 6.4 and GP has refused to test Ft4 or Ft3, folate, B12 or ferritin

You have found (yet again) that Teva levothyroxine is intolerable

You have no Liothyronine tablets and GP refusing to prescribe

That you have been trying to get new prescription from GP for Glenmark or Aristo levothyroxine tablets (both mannitol and lactose free) or alternatively liquid levothyroxine.

But despite numerous attempts by phone and email unable to get an appointment or prescription

You are therefore left with no replacement thyroid hormones at all

Espeegee profile image
Espeegee in reply to SlowDragon

Yes 👍🏻

Jenny583 profile image
Jenny583 in reply to birkie

Hi birkie, Appalling treatment especially given that you have no thyroid!

As for the vitamin D/calcium/Primary hyperparathyroidism situation - Can I ask...Has the science changed? This article worries me, given use of mouth spray.

Low Vitamin D Levels, and Low Blood Vitamin D. - Parathyroid ...parathyroid.com › low-vitamin-d

birkie profile image
birkie in reply to Jenny583

I'm on a parathyroid Web site, in certain cases giving high doses of vitamin D is not recommended if your calcium is at the top end or over range because vitamin D can raise calcium, after taking the 3000iu from sep 2020 to Dec 2020 my vitamin D went from 29 to 52 after 3 and a half months, had it re done in March this year and its now 42..the body will keep vitamin D down to protect it from calcium, as I have trouble with absorbing meds (colitis /lactose intolerant) I decided not to take the tablet form of vitamin D, if you have a low vitamin D and your calcium is also low then this is called secondary hyperparathiyroidism, but my calcium was 2.51...2.54) so hardly low... since starting on vitamin D it's been ..2.67..2.59.. 2.63..and PTH as shot up again, both PTH and calcium are inappropriate in that both are at the top end of the range they should be like a see saw.. One low the other in the upper range 🤷‍♀️

Jenny583 profile image
Jenny583 in reply to birkie

Yes, but doesn't vitamin D enable calcium absorption. An Endocrinologist tried to prescribe me Vitamin D3, as I had no calcium in blood, so without vitamin D, I was hypocalcaemic, so wouldn't keeping vitamin D low be a good thing in your case birkie, or am I missing something. I was told the rampant hyperparathyroid hormones were stealing calcium from my bones and teeth, but I had secondary hyper, so if you have primary hyper the parathyroid hormones are doing what? would they be working overtime trying to remove the vitamin D? Just a thought x

birkie profile image
birkie in reply to Jenny583

Yes the parathyroid glands go over active much like our thyroid going over active, my PTH was over range with 2 upper range calcium and over range calcium, the PTH keeps calcium at a tight range, in primary hyperparathyroidism their is a signal from a defective para gland to take calcium from the bones dumping it in to the blood stream making our blood calcium go up.. That's why I've got kidney stones, ostiopeania, calcification of joints because the calcium can settle in joints if there is to much in the blood, my vitamin D should not be to high because my calcium is already top end and over range, but Some endos don't realise the body will keep the vit D down to protect the body from calcium so giving someone high doses of calcium is not good, usually with secondary its vit D deficiency and low calcium in your case. My endo gave me vit D to bring my PTH down, thus bringing the calcium down but it's not proven that low vitamin D raises PTH Mine keeps fluctuating as does my calcium usually meaning you can have a problem with a para gland.Endos usually jump on secondary hyperparathyroidism if they see vitamin D deficiency not realising the calcium is not low enough to make that diagnosis example... PTH... 8.1....calcium 2.51)..PTH.. 9.5..calcium.. 2.54) these calciums are not low so he should really have thought before giving me vitamin D.. He did however write saying I probably have primary hyperparathyroidism 🤷‍♀️ but after the vit D of 29 he gave me the vit D prescription and dismissed me.. 😔

Jenny583 profile image
Jenny583 in reply to birkie

I notice a change in the teaching on vitamin D in the last 5 years, Dr's used to say that vitamin D causes calcium to rise, & that the body knows best when it keeps vitamin D low. Now though, they are saying that the body does not know best, & that vitamin D is a bad thing, & Dr's know better, & so make vitamin D levels higher. But that it does not cause calcium to raise, but instead to lower? that's a big about face!

The cynic in me worries that this new teaching is a way of avoiding surgery at their convenience, not that of the patient.

Have you had lower or higher levels of calcium while on vitamin D? do you feel better or worse? I expect it's hard to tell while you are suffering from colitis & the effects of zero thyroid & zero T3!

I hope you find legal help for obtaining justice, & the right to lactose /excipient free T3 or T4, but the change in advise on vitamin D bugs me, as you said yourself that endo should not have prescribed it, & yet you are taking better you spray. Vitamin K2 is essential too.

birkie profile image
birkie in reply to Jenny583

Hi🌹

The vitamin D seems to have raised my calcium it was 2.51 then 2.54 before the vit D, then I've had 2.67,2.59,2.63, but calcium and parathyroid hormone fluctuates in primary hyperparathyroidism, endos seem to think over range PTH is caused by low vitamin D, this is not true, your over range parathyroid hormone did not cause your vit D to be low, that's why some endocrinologist miss primary hyperparathyroidism because they see the low vit D and assume you have secondary hyperparathyroidism, but secondary presents with low calcium not top end or over range, I feel worse after starting vit D and to be truthful I don't have any symptoms of hypo I'm hypo now but feel hyper, sweating, tremor, shaking, along with the toilet trips the utter thirst, headache, bone pain and bone vibration, I was constipated before going on the T4 then I got the bad cramping runny bowles but that's the fillers in the T4 since decreasing it to 25mg its not made much difference so far, it will only go when I come off the T4 totally, also you are correct in the way endos view primary hyperparathyroidism in relation to vitamin D, they just change their mind to suit, denying people a cure, also many of them fail to understand the relationship between calcium and parathyroid hormone, our surgeon on the parathyroid site said mine looks like the one where you can have a upper range calcium ( does not need to go over range) and an upper over range parathyroid hormone this is normocalcemic, but if certain endocrinologist don't see the calcium /pth way over range then they just put you on watch and wait, same as my thyroid it took my surgery 12 months to Diagnose me with graves then I lost my thyroid it was so toxic, I'm trying to find out what bloods my gp performed during the 3 months before my diagnosis, he kept saying my thyroid function was normal, then I get diagnosed by a completely different gp as over active thyroid, ( later graves) so I don't have much faith in gps or endocrinologist 🤷‍♀️

Espeegee profile image
Espeegee in reply to birkie

Get on to your local councillor or your MP, your local newspaper, make a fuss. I know it’s not easy but this is your one and only life, you need to be able to live it well not in constant fear that your lack of a thyroid is going to make you too unwell to do so.

DeeD123 profile image
DeeD123 in reply to SlowDragon

I know of one person but not seen any others on the different groups but there again it might be because they don’t need a support group if they are well on it

DippyDame profile image
DippyDame

birkie that is dreadful!

You need to act!!

They don't have a clue about the misery they are causing or how to deal with it!

As Robert Burns wrote...

“O, wad some Power the giftie gie us

To see oursels as others see us!

It wad frae monie a blunder free us,

An' foolish notion.”

Medics sure need to see themselves as their patients see them and rid themselves of their "foolish notions" regarding thyroid disease, it's diagnoses and treatments.

We need to be free of their blunders!

She will be basing her decision on TSH only which science shows is wrong

She will be hard pushed to argue with the renowned authors of the following Paper, among them TUK's diogenes (Dr John Midgely) and a former physician to the Queen (Dr Anthony Toft)

bmcendocrdisord.biomedcentr...

So...

You were prescribed T3 by an endo

then you say...

firstly my gp decrease my T3 medication

Was that her call?

Then you ask to go back on T3 which has helped you..

and she replies

only the endo can do the medication change

But, she has already made a change!

She appears to be contradicting herself.

She also appears to be dodging responsibility and....

now she thinks it's appropriate to leave you until August on 25mcg levo when you are clearly hypo and will be seriously undermedicated

Her reasoning is flawed and riddled with holes!

She claims you were overmedicated but she had no FT3 lab to prove it

You will NOT be overmedicated unless your FT3 is over range....

(A few of us, myself included, do need FT3 over range though that's unlikely in your case)

Idiotic to leave you like this until Aug.

Back to the surgery, speak to the practice manager before you ask to see a GP, explain your dissatisfaction with the treatment you've had and how it is making you unwell again, then ask to see another GP.

We really need to take our courage in both hands and stand up against this rediculous treatment from the people who are tasked " to first do no harm"

Sorry, I'm ranting again but this nonsense has gone far enough....for all of us!

I'm gobsmacked too!

tattybogle profile image
tattybogle in reply to DippyDame

DD...

GP along with Endo reduced T3 from 40 to 30 to see if her symptoms were overmedication (birkie thinks they are due to hyperparathyroid, but those results are fluctuating / borderline so she having difficulty finding anyone to act on it )

Birkie then offered to stop the T3 herself to prove to GP it wasn't T3 causing her symptoms which continued on 30mcg .

GP suggested reducing levo to minimum due to birkie having problems with side effects from levo and doesn't want to stay on it as side effect are worsening her colitis.

its not very clear if GP is now responsible for prescribing T3, or if it is endo.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

endo reduced T3 from:

40mg T3 ........................TSH 0.05 / T3 6.6

after 8wks on 30mg T3.... TSH 23.47 / T3 1.5 / T4 2.50

birkie stopped T3 to prove to GP it wasn't T3 causing symptoms ...

after 7wks on 50mcg T4 (teva)... TSH 6.4

DippyDame profile image
DippyDame in reply to tattybogle

OK....you find me wrong again!

Well spotted!

I was quoting from birkie's post.

Maybe I should have looked at previous posts!

Either way...it's a mess and needs to be fixed before August and before birkie feels even worse if GP reduces to 25mcg.

Thank goodness I can source my T3 and self medicate because the more I read about the current treatments meted out to patients the more I despair for anyone who doesn't respond to the most basic of thyroid treatments.

As for the current obsession with TSH....don't start me on that!

Patients deserve better.

SlowDragon profile image
SlowDragonAdministrator in reply to DippyDame

Self sourcing lactose free T3 not currently possible

DippyDame profile image
DippyDame in reply to SlowDragon

Yes, I realise it's unfortunately not an option for birkie.It's dreadful the way she has been treated.

She mustn't wait in misery until August.

Good advice from you below.

birkie profile image
birkie in reply to DippyDame

Hi❤️

In Dec 2019 I started on T3 felt OK on it my levels T3 went up TSH. Went down going in the right direction 👍 was fine till April 2020 when I suddenly started going on the toilet way more frequently through night and started feeling like I was dehydrated all the time drinking like I can't quench my thirst also had a stonking bad headache with bone pain and bone vibration stilm ongoing 😢 I found 2 over range calcium in my thyroid blood work but gp never bothered I asked him to send them to endo then in June I had PTH of 8.1 ( range 1.6...6.90)

Calcium 2.51...then Aug PTH of 9.5 calcium 2.54) endo wrote saying it looks like I probably have primary hyperparathiyroidism, all the symptoms fit with this, but my endo and surgery have just been doing intermittent bloods since not all 3 together PTH, cal, vit D, they have pushed me from pilar to post only doing calcium with over range in March 21 at 2.67 but did no PTH and one this March 2.63.. 2.59 in Aug 21..they have failed to do the correct tests for diagnosing primary hyperparathiyroidism, I've spoken to a parathyroid surgeon in Oxford who is sure I have this condition but says its the one where the PTH is over range and the calcium is at the top end normocalcemic, but my surgery and now endo are ignoring the over range PTH and saying all the symptoms are due to my T3... The endo and gp decrease my T3 on these results.. TSH.. 0.05...T3 6.6 which I told her were not over medication.. Then I told her if she thinks all my symptoms are of T3 then I will come off it and go bk on T4 for a period of 6 weeks no longer!! All my symptoms remain they have not changed, 😭 I'm honestly think of moving into my bathroom as I practically get no sleep though night for bloody peeing😩 I've also passed kidney stones, it's just a nightmare with my surgery 😭

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

Write all this down in date order

Test results and ranges too

Short and to the point and contact PALS

DippyDame profile image
DippyDame in reply to birkie

Good advice from SlowDragonDon't wait until August!

tattybogle profile image
tattybogle

"In Dec 2019 I started on T3 felt OK on it my levels T3 went up TSH. Went down going in the right direction 👍 was fine till April 2020 when I suddenly started going on the toilet way more frequently through night and .... "

This following thought doesn't help with your immediate problem of not having any T3 and being stuck on Levo that you don't like....., but if you do get your T3 back again , i think you should consider that 40mcg might be too much .

How soon did you get up to 40mcg ... ? i wonder if perhaps you didn't try 20/ 25mcg for long enough ?

Some of your previous posts do suggest you had problems right from the start of taking T3, but from posts at the time it's very hard to figure out how fast you increased your dose.

In posts written in 2021 you gave tests results for 20 or 25 mcg (not clear which), but in many later posts you wrote that you were taking 40mcg for those same tests .

You've had a couple of unexpectedly high TSH results , but on reading your posts more carefully it seems you stopped T3 completely for 6 ? days at some point around the time of the TSH 15.12 in Aug 2021 .....and then again for 5? days shortly after the dose was reduced from 40 mcg to 30mcg ,and then TSH was 23.47 in March 22..... but you didn't mention these periods of no T3 or give dates for them when posting those two TSH results on here ,, this might explain why they were both so high ?

You wrote that your symptoms of tremor/ shaking/ sweating/ palpitations stopped when you stopped the T3 ( but the frequent urination / thirst /headache remained )......and when you started T3 again at 40 mcg your tremor /shaking/ sweating etc returned within just a few days .... this certainly suggests to me that 40mcg is probably too high a dose for you .

We can't rely on the March results from 30mcg to be accurate if you stopped all T3 for several days at some point prior to testing ... so then perhaps we don't really know what your results are from taking 30mcg T3 .

I think if you do get your T3 back it would be wise to start at lower dose than 30 mcg and only increase if you have had reliable bloods done on each dose ,( timed properly for last dose , and with no periods of 'none at all' to distort TSH results ) and if you are sure you have tried lower doses for long enough.

The parathyroid conversation is still going to be difficult with both GP and Endo because although you had 2 over range parathyroid results in 2020, you have since had 2 complete sets of PTH /CAL/VIT D and both came back as 'in range'

Sept 21 (Hexam endo ) PTH 3.6 [1.6-6.9] Calc 2.41 [2.1-2.6] Vit D 42

Dec 21 (Hexam endo) PTH 2 [1.6-6.9] ...... discharged.

March 22 PTH 6.6 [1.6-6.9] calc 2.49 [2.1 -2.6] Vit D 43

Perhaps the best way forward at the moment is to contact endo now and say you really cant handle remaining on Levo till aug with no T3, and ask for reinstatement of T3 but at a lower dose than previously ... (and if you did have a period of taking No T3 before the test on 30mcg ,it is important you let them know this and what dates it was from/till as it affects how they will view your blood test results.

They may have realised you did something different before that test, as those results were unlike your previous results on T3... do you have any previous results on 30mcg T3 to compare them to ~ from a time when you were previously taking lower dose T3 ?

birkie profile image
birkie in reply to tattybogle

I started on a lower dose of T3 at 10mg that's why some of my bloods were hypo I knew they would be, no symptoms of wanting the toilet, thirst, ect, I then increased by 5 to 15mg for 2 weeks felt OK not hyper got bloods still hypo so I know I needed to increase again, I did to 20mg but unfortunately my surgery were not doing bloods unless they were emergency ones (covid) so I had to gage it myself I went to 25mg still felt OK, got to 30 mg and managed to get bloods done I noticed my T3 still needed tweaking a bit so went to 30mg still OK I got to 40mg my levels were great T3 upper range TSH under 1...i stopped at this level, then as I said I started in April 2020 urinating way more, thirst, dehydration, bad headache bone pain and bone vibration felling sick and vomiting, this is still ongoing its made no difference if my thyroid levels are OK, hypo I've never been hyper with thyroid bloods.. TSH.. 0.05...t3..6.6 this was OK.. Not over medication,, even when I was overactive with graves being in hospital in thyroid storm I never went on the toilet as much as I am now or drink like I'm in a hot desert, have this awful bone vibration, it honestly feels like I'm sitting on something that is vibrating, I thought I'd sat on my phone the first time I felt it but I hadn't, and still having it now especially in my leg /ankle bones and rib cage.. 😔

tattybogle profile image
tattybogle in reply to birkie

That sounds like you were 'aiming' to get T3 at top end of range as a target , despite saying you felt ok on 25mcg . Have you considered that the 'top end of range' might actually be a bit too much T3 for you?

and that is top end of range after 12 hrs ( your lowest point ), we know that when you didn't leave that long a gap your T3 level was around 11. meaning you were quite a lot 'over range' for much of the time on 40mcg dose

So if you felt ok on eg. 25mcg T3 then why not offer to try it again for longer this time ....it might be easier to persuade endo to give it back to you at that dose , for now at least .

birkie profile image
birkie in reply to tattybogle

Never had a test when off for 6 days, I waited 10 weeks before having the test went bk on the t3 so that was actually 9 weeks so the week off wouldn't make any difference, but even doing that made no difference to the other symptoms, still going on the toilet loads, thirst, bone pain bone vibration, headache, with bouts of sickness, 😔

tattybogle profile image
tattybogle in reply to birkie

i'm assuming the most urgent thing you want is to get your T3 prescription back ?

so yes .. i have understand the urinating /vibrating/ symptoms didn't change when you stopped all T3 for a several days, and are still there now on only 50mcg levo .... and they could therefore be related to 'something else' other than thyroid hormone......... (but if that 'something else' is parathyroid , realistically they aren't going to do anything about it at the moment based on your parathyroid results since Sept )

.. BUT since you said your tremors/ sweating/ shaking DID go away when you stopped all T3 for a few days .. and came back within days when you restarted ... that is what makes me think those symptoms might be indicating the T3 dose was a bit too high for you .

But stopping totally for 6 days and the restarting is not a very reliable way to try and rule out which symptoms are related to thyroid dose and which are not ... better to reduce dose for a reasonable amount of time and asses how everything feels once the body has had a decent amount of time time to settle to that dose .... rather than stop totally and start again at similar dose ... some issues could take much longer than a week to improve.

With your current symptom 'picture' , if you don't accept the possibility that at least some of your symptoms might have been due to 'a bit too much T3' ,then it's going to be very difficult to get anyone to prescribe you any T3 .

p.s your posts from earlier in 2021 said the blood results were from taking 20/ or possibly 25mcg T3... so were you actually taking 40 then ?

birkie profile image
birkie in reply to tattybogle

I got to 40mg as I said didn't feel symptoms were related to thyroid medication rather calcium going over range or top End this was proven in march 2021 when I had All those symptoms and sweating fast heartbeat, tremor like you I thought was I taking to much T3..but T3 in range tsh in good range, but I asked the gp to do calcium it came back has 2.67..to much calcium in the blood stream gives fast heartbeat, shaking/tremor, sweating, it happened again in Aug I was taken to hospital in tachycardia same symptoms they did my calcium it was 2.59...I don't think my body likes this amount of calcium its giving me bad symptoms, also the calcium dose not need to go over range to give You symptoms, that's why I think my surgery are getting confused as some symptoms of hyperparathyroidism can cross over like hyper symptoms, I'm on 25 mg T4 now been on 50g for 7 weeks I'm still sweating, fast heartbeat, tremor, headache, weeing way to much, very thirsty bone vibration ect so it must be something else and seeing as 2 endocrinologist said I probably have primary hyperparathyroidism I'm leaning more to that diagnosis 🤔

tattybogle profile image
tattybogle in reply to birkie

"Never had a test when off for 6 days, I waited 10 weeks before having the test went bk on the t3 so that was actually 9 weeks so the week off wouldn't make any difference, ..."

healthunlocked.com/thyroidu...

birkie , just to clarify . you did say you stopped T3 shortly before the August 2021 test (where TSH was 15.12 / T3 6.6 / T4 2.8 )

the details are in the post above ~ around 15th August2021 you had at least 5 days of no T3 at all (which improved you symptoms) .. and you had a blood test on 23rd August2021 with TSH 15.12 ...... so the explanation for that high TSH is definitely those days without any T3 .

It's very important to make sure you give ALL the most up to date information about recent dose etc when asking for opinions on blood results on the forum, other wise the advice given will be wrong.

I noticed in 2020/2021 you have very often posted 'latest' blood results for comment without letting people know that you had already increased your T3 dose since those bloods were done. This just leads to people advising you to increase dose further, based on out of date information about what your actual dose is .

birkie profile image
birkie in reply to tattybogle

In Aug 21 I was in hospital in tachycardia, my calcium was 2.59..i had bloods done in hospital for thyroid I never managed to get a print out but the hospital doc said they were all in range.. So he dismissed the fast heartbeat as over medication, Also I've had bouts of sickness since 2020 and I've been told calcium can make you sick.. I vomited in hospital, I get so many blood tests its hard to keep up with them especially as I was also getting pth, calcium vit D although not together as it should be done.. Pth, cal vit D,.. When I was having PTH bloods done the surgery also did thyroid not telling me, I'd taken my T3 meds so some bloods are nul and void.. Its been a nightmare trying to separate them off from bloods done at 8.30 with no food or coffee /tea.. Just water.. I can say I felt OK on 40mg....the only concern was the frequency in urinating, thirst, bad headache, bone pain /vibration and yes sweating, fast heartbeat, tremor/shaking... These are also symptoms of to much calcium in your blood stream so I think it confuses some doctors, I'm hypo now and still sweating, fast heartbeat, shaking and all the other symptoms nothings changed.. I'm drinking loads of water to flush any excess calcium out.. Passed another kidney stone in Feb 2021, so life stinks at the moment 😤

tattybogle profile image
tattybogle in reply to birkie

A&E visit was around 12th JULY 2021 for tachycardia ( the second time this had happened since you increased T3) The 'missed' T3 days were AFTER that ,around Aug 15th and the blood test was Aug 23rd.

Yes you're reports of results/dates/doses/conditions of test are hard to sort out , which does make it very difficult for anyone to interpret them . and in later posts there are frequent changes in what doses you say you were taking at the time the tests was done .. so it's all about as clear as mud .. but as far as i can make out from previous posts ......

Since March 2021 when you started increasing you dose from 25mcg to about 35mcg you had T3 results as below :

(even taking into account that most of your result are done after T3 taken ... the fT3 results do look very high.... perhaps your body just doesn't like being over the top of the fT3 range for so many hours each day ? .. and perhaps you'd do better on a lower dose of T3 ~'shaws' mentioned to you that she is ok only 25mcg T3 only i think)

March 2021:

TSH 0.02 fT3 19.3 [3.1-6.8] no T4 (with meds taken )

TSH 0.1 fT3 16.5 [3.1-6.8] fT4 2.8 [11-22] (with meds taken )

TSH 0.5 fT3 5.9 [3.1-6.8] fT4 2.4 (without meds for at least 12 hrs possibly longer)

April 2021 ...You are in A&E for the first time with tachycardia of RHR 133

'shaws' told you she only needs to take 25mcg T3 , and the A&E said ?overmedicated , so you tried lowering to 30mcg for a little while.

June 2021 .. TSH 0.04 fT3 11.3 [3.1-6.8] (3.30pm blood test after meds taken)

July2021 in A&E for second time with tachycardia ,this time RHR 147 .

Aug 15th 2021 stopped all T3 for ?5 days and symptoms of sweating / jittery / palpitations/ headaches / tremors .... all got better.

August 23rd 2021 TSH 15.12 fT3 6.6 fT4 2.8

Gummybearx profile image
Gummybearx

I had the exact same comment from my gp. She said its too complicated and referred me to endo. They up and reduce my t4 when they feel like it but not t3, endo does this. Ive been under endo for a year again so cant go to gp. Spoke to endo a year a go, got another appt on jul 5. Hope you get it all sorted soon

UrsaP profile image
UrsaP

Hate to say this but don’t count on the endo being any better. I had an endo tell me I could try stopping my medication to see how I got on, 'because he couldn’t be confident of my diagnosis as he had only just come to my case’. I’m on T3 mono, for the last 12 years, I was diagnosed 30+ years ago. So if we move, get a new dr/endo does that mean they can decide to just stop a necessary med, to suit their own whim?

Needless to say I declined his offer. I wonder if I had stopped my meds would he have then tried to put me back on T4 not T3? A tactic maybe.

And agree. It would not happen to anyone else on lifelong medication for a life long condition.

I have seen several different specialists this last 18 months as I try to get to the bottom of longterm underlying AI flares. Apart from the eye specialists who have clearly stated that it is connective tissue in my eyes, I have been denied any diagnosis elsewhere, apart from the Gastro, who on seeing me, and clearly making his own mind up as to why I was there, not actually looking at the referral or asking me, decided that I probably had IBS and advised the GP to issue a medication. All prior to any other testing?

Needless to say I refused this at the chemist the other day. Funny how it is only some meds they won’t trial for us all? Happy to give out antidepressants and who knows what else.... no need to make sure, oh but don’t ask for thyroid meds...dangerous!!!

Having been ignored when referred to the rheumy (lupus clinic) with the connective tissue, I was referred elsewhere, and there too, dismissed no interest in the CT, denied any connections between HypoT/Sjogrens, even though it is listed on NHS site, didn’t know anything about biopsy, but as a fellow sufferer could recommend Volterox gel for my OA. My OA is not a problem. Not why I was there! PS -told me all about his wife who was wonderful when taking meds, not when wasn’t - insinuating all unresolved hypoT was non-compliant! And of course telling me with some glee about free prescriptions. He got the message, from the look, that this comment didn’t go down well.

Are conditions that largely affect women 40+ being targeted to be sidelined.

Sub clinical this and that? Sero negative, Sicca syndrome....which apparently is much more prevalent than Sjogrens...might that be because they are not diagnosing Sjogrens any more? Cos they can’t cover their backsides with a pos antibody or US scan? Nappy medicine. Patients not at the centre. Dr’s immunity to responsibility and ego are. We are being sidelined -cost cutting - easy targets. Can easily be blamed on menopause/hormones/depression....somatic disorder!!!

birkie profile image
birkie in reply to UrsaP

You said that in a nutshell 👍 I presented with what was obviously overactive thyroid symptoms but my gp kept telling me it was my menupausal state, month after month I went back and forth to my surgery unfortunately getting this same gp, I then tried to get another gp who said the same thing... Menupause 😠.. What really annoyed me was in the latter months before diagnosis I'd lost around one and a half stone in weight, I mentioned this along with my symptoms! The gp congratulated me on my weight loss🤦‍♀️ I explained I was not dieting, nothing seemed to be getting through to him.It reached its climax in Aug 2018 when I could no longer operate as a human being, bedridden just really ill, I again saw the gp who told me to stop bothering him as he has other more ill patients😔 then forward to sep 2018 when lovely lady gp who'd just joined this practice diagnosed me on the spot, she was gobsmacked I'd been coming to the surgery for a year and had no diagnosis, needless to say she no longer works at my surgery 😭.. 2019 full thyroidectomy as my thyroid was so toxic it couldn't be saved. Sjogrens was mentioned by an endo I spoke to in Newcastle but nothing came of it, obviously I really didn't know the implications of having no thyroid only being told I'd go hypo and need synthetic hormone for the rest of my life, that's not been as easy as the endo and my surgeon made out, and I certainly thought I'd be treated way better than I am having no thyroid, also I've found I get treated like I have a thyroid! One gp recently told me I could not have had a full thyroidectomy as my body was producing thyroid hormones🤦‍♀️.. For god sake I know what thyroid procedure I had... Its in my records, I'm producing thyroid hormone because I'm on T3.. You can make this up its like a horror story... 😠😠

UrsaP profile image
UrsaP

Apologise if I’ve already said this, I thought I’d already replied but not showing.

Firstly, I don’t think I have ever been accused of saying anything in a nutshell. That did make me smile. lol

Diagnosis is so poor, as it seems to be for many largely female conditions. The Dr’s have closed mind, thyroid issues usually affect over 40s females. Only because they are so set in their ways they won’t look for it properly before 40. Then of course they have to be sure, have to have the right backside covering to protect themselves. I do wonder how they sleep at night, they must know how many of us are being let down by them. Though I suspect for some time there has likely been psychological profiling to allow or not students to go forward into medicine. Tick boxers only. On top of that dub down training to remove basic T3 knowledge etc, and these ‘new’ breed of Drs are quite happy to leave us mistreated, because they have done all they can, ticked all the boxes used all their limited knowledge, and sent us on our way, patting themselves on the back for a job well done, whilst labelling us as ‘somatic’. They don’t recognise it, can’t be their failings, so must be in our heads.

Ive become more and more cynical over the years.

It took me 10 years to get a diagnosis, despite seeing the same ‘specialist’ that operated on two of my sisters. After 2 years of testing he couldn’t make his mind up as there was something then there wasn’t then there was, then there wasn’t etc...

Arrogant git dismissed me with a flick of his wrist, literally. I was about 20 then. 10 years on got a diagnosis. 20 years on T4 getting more and more ill, bigger and bigger, till I too gave up work as too ill. I was lucky, I got to see Dr Peatfield. And I have to say my GP of the time was supportive in me seeing him. My Gp saw me get well on T3 mono. Saw that T4 kept making me ill every time I tried to reintroduce it. Sadly he retired a few years ago.

Still on t3 12 years on and guess what no OA no palpitations etc etc!

TG for these forums where we can learn from each other, and for ITT and Thyroid Trust and such who are working tirelessly to get heard and get better diagnosis ad treatment for us all, if not for us for future generations.

We are the product of medicine that is decided by men, based on men, and women are treated as hysterics when they can’t understand what is happening to us. Matt Hancock put out that Women's Health consultation recently. In it they ask what illness we have suffered from - menstruation, pregnancy and menopause are listed as options. These are part of being a woman, part of life cycle and reproduction. They are NOT illness. If someone is ill during theses times then it should be a red flag of something underlying causing an illness...some deficiency of hormones or such.

This consultation epitomised the very attitude it proposed to alter! Women's health is 2nd class and IMO women’s health is further being sidelined to save costs.

birkie profile image
birkie in reply to UrsaP

Firstly I thought I'd waited long enough, over 12 months to get my diagnosis, can't imagine how you survived at 10 years it must have been a living hell❤️.. The A&E doc told me if my sister in law had not got me to the emergency room I'd be in a full blown coma as I'd gone into thyroid crisis 😠 as I had no choice in keeping my thyroid I did ask All relevant questions as to what would happen after my thyroid was gone... Honestly you are correct in what you say about doctors ect.. I'm suprised they didn't just tap me on my head give me a lollipop and say everything will be OK... Because I got nowhere asking questions 😠.. I fear they have to much power in how they treat us and the nhs golden rules and guidelines are a joke! It appears to me we are like children seen but not heard when trying to talk to gps and endos, makes me puke😠😠

birkie profile image
birkie in reply to UrsaP

Can I just tell you a little quote a endo told me last year.. "we are good when we get a diagnosis, but not very good at diagnosing 😲 filled me with confidence... NOT!! 😄

UrsaP profile image
UrsaP in reply to birkie

And not surprising....basically they are ‘good’ (ie - happy to diagnose) if they can tick the box to cover their own bottoms. We know they are not good at diagnosing for the same reason as above - we as humans are all so different with different deficiencies causing our problems, they are wanting to diagnose us all as if we were clones of each other. They have a rigid set of rules and are unable to deviate their thinking from the tick sheet. Indemnity! Insurance is driving this nappy medicine. Just my opinion.

silverbelle51 profile image
silverbelle51

I was blown away by your comment, but I think we place too much trust/confidence in the Diagonostic skills of doctors and when we get all messed up we are left to sort it all out suffering all the way. I think healthcare is practiced using a "procedure manual" and guide lines that fit the pharmacy sales manual. In short I don't trust doctors any more and any health education widely touted! Remember Ancel Keyes and how he trashed the "edible incredible egg" Found you an interesting read ! A body out of balance is a sick body - fluid/acid/base balance!

birkie profile image
birkie in reply to silverbelle51

Hi🌹

As thyroid disease sufferers, we are treated appallingly, that's been my experience and many more on here, as you said I to feel the GPS are out to make a phama buck, 💷 I was rushed to hospital in 2015 with rectal bleeding, on discharge the specialist prescribed me a medication to help with my colitis, when I went to pick it up at my surgery the gp changed it to ibs tablets 😠 I rang to complain but were told those particular tablets were very expensive and these tablets (ibs) would do the same job.. 1 the ibs were cheaper for the gp I'd need to take 3 per day as prescribed so I'd be getting a bigger prescription more for him.. As the tablets the specialist prescribed I would take one per day.. Same with my OA specialist prescribed a tablet ( expensive) and gp tried to put me on opioids.. Addictive tablets.. Like you I've lost all trust in the nhs.. 😠

UrsaP profile image
UrsaP in reply to birkie

I swear conditions affecting women over 40 are being sidelined by the Gov/NHS. Easy targets! Past our’ usefulness’, childbearing age. Fobbing us off with poor investigations, assumptions refusal to diagnose without a nappy, - sub clinical, Seronegative - new labels for old conditions that mean they don’t actually have to do anything, or offer support. Blame it on Somatic disorder....

I was at the Gastro recently, for issues of the stomach/bowel, also some reflux and having oesophageal checked. Main reason was the stomach/bowel -saw the consultant - he focused on the reflux and oesophageal, said he would send me for gastroscopy and US, but it is probably IBS, so will instruct GP to issue meds. I thought GP would ring, but they didn’t, they just prescribed. I refused them. I'm not taking medication on an assumption. Funny- they give out this stuff, more and antidepressants without any need to confirm or check need, yet a hypoT person who isn’t getting well on T4, year after year getting worse, can’t be given T3 which is no more dangerous than T4 if monitored right and needed. Double standards. I saw a document stating that T4 side effects same as T3. It disappeared off the web. I think it was under the BTA or BTF but was some years ago and can’t be sure. Kicking myself for not keeping a copy!

birkie profile image
birkie in reply to UrsaP

I totally agree with you and you seem to have gotten the same useless advice I got when I saw a gastro specialist a number of years ago, I was having bad issues with my bowles and stomach the gastro examined me and prescribed ibs tablets 😩 forward on a couple of years later I was rushed in to hospital with rectal bleeding and vomiting blood, turned out I had colitis 🤦‍♀️ 11 days in hospital on drugs mainly steroids as I can't stomach antibiotics, the specialist prescribed tablets he said take one a day for prevention, I went to my surgery as he'd sent the scrips to my gp, when I picked it up they were ibs tablets, I'm pretty sure my specialist didn't pescribe those but my gp just said "ho we don't feel those tablets are worth handing out as they are far to expensive but those tablets will do the same job... 😠I have terrible side affects from synthetic meds that was my main fear after thyroidectomy that I would be placed on a synthetic thyroid hormone and I would have a reaction to them.. But endos just treated me as if I was a nuisance and haven't really taken me seriously in any thing that's happened to me since my thyroidectomy, I got the impression the surgeon would wip my thyroid out I'd be put on T4 and bobs ya uncle I'd be back to normal in no time.... If only that were true.. 😔

Batty1 profile image
Batty1

Not shocked I will be curious what the Endo does.

birkie profile image
birkie in reply to Batty1

Nothing I would imagine 😤😤

Batty1 profile image
Batty1 in reply to birkie

I don’t understand why your referred to Endo but the Endo sends message to GP on how to treat your condition… is this correct? How unhelpful is this procedure to people who are unwell.

birkie profile image
birkie in reply to Batty1

She only sent the message to decrease my T3... Its complicated as in 2020 my calcium went over range twice so gp sent endo a message the endo in turn requested parathyroid hormones to be tested they came back over range both of them, endo wrote saying I probably have primary hyperparathiyroidism 🤷‍♀️ then I had vitamin D done which was deficient so endo jumped on secondary hyperparathiyroidism which was incorrect as my calcium was 2.54, to high for secondary, I've mentioned all my symptoms which are more of primary hyperparathiyroidism, but endo and gp are saying it's t3🤷‍♀️ so I've had a tug of war with gp and endo since 2020..I came off T3 went on T4 just to show the gp and endo these symptoms remain weather I'm on T3 or T4.. But now I'm off T3 the gp says I've to see the endo in Aug to get T3 reinstated if I want it.. Its a total nightmare, im at the end of my rope with it all.. They just don't listen, now my gp just asks the endos advice then tells me what's going to happen, when my parathyroid tests came back over range I got the print out it said.. Note to endo.. Do you want us to do anything about this patients parathyroid results? 8.1..9.5..(ranges for parathyroid 1.60.. 6.90) I think the thing to do would have been to refer me to a specialist 😠 no I just got a letter saying I probably have primary hyperparathiyroidism 🤷‍♀️

Batty1 profile image
Batty1 in reply to birkie

I feel for you it should be the Endo dealing solely with your issue and not being bounced between him and GP … I don’t see that being effect healthcare.

birkie profile image
birkie in reply to Batty1

Nor do I, 😔I've been pushed about since 2018..i read all the NICE guidelines and I qualify to be sent to a surgeon in relation to primary hyperparathiyroidism, as for the thyroid side I'm just going to try to get a quicker appointment 👍

Wua13262348 profile image
Wua13262348 in reply to birkie

I feel for you Birkie. My doctor has now referred me to Endo because I asked her to, and now says she will do no more testing as Endo will do if necessary. I've been told I don't need Levothyroxine so don't think I'll get another prescription.Since waiting list for me likely to be 3 years, this is unacceptable. I told doctor that the referral will likely be refused, which it will.. She says Endo aware of all my previous thyroid results . Told doctor that if that is the case then the Endo is clearly incompetent, and it will be a blessing in disguise if the referral gets refused, as she clearly does not have the level of expertise that I require, and I feel that I would be well advised to find my own private Endo who does have the level of expertise required.

Only accept Glenmark levothyroxine which you will only be able to get from an independent pharmacy as LLoyds and Boots don't have an account with the supplier of Glenmark , who is Phoenix.

None of the other tablets are suitable for me, but they refused to take any action to rectify this for me too when I was being given one that was totally unsuitable for me. Only from this forum was I made aware of Glenmark.

Doctor made me make an appointment with surgery pharmacist to request this, who works 1 day per week. I had to sit with a phone in my hand from 8a.m to 3p.m. which is when she phoned. Surgery pharmacist agreed to mark my prescriptions "glenmark only", but couldn't okay a prescription. I had to phone at 8a.m.continously until 8.45a.m. to make an appointment with doctor for prescription. No appointments left. Try again tomorrow, and so on.

When you eventually get an appointment you again have to carry a phone in your hand from 8a.m until they telephone , which could be up to 5p.m.

I could go on . I too am getting blocked, bounced around, being told absolute nonsense, and you are not allowed to email unless you have permission etc., etc. Access to patient past blood results are not computerised and a form must be filled in to request, with a 2-3 week minimum wait.

Don't consider Aristo as you will probably react to it. It contains maltitol/ corn starch/ maize starch, which is not suitable for IBS sufferers, as will probably cause diarrhoea as it draws water into the digestive tract by osmosis.

Think I'll be as paniced as you in a couple of weeks when my medication runs out.

I have emailed a private Endo re. an appointment if he still does Zoom, sent for a thyroid genetic test kit and a Medichecks finger prick advanced thyroid test kit. I will need to ask doctor for the surgery to take the blood for this, as no way can I get enough blood for the small test tube sent. I expect them to refuse to do even this. That being the case, I think I will be telling them that this would reflect very badly on them since the test is needed for a private Endo and is the only way of ensuring that T4 and T3 are tested for!This particular private Endo requires a doctor's referral! I have emailed him quite a bit of info. and asked if he will waive the need for a doctor's referral.

My heart really does go out to you. Patients are too ill to negotiate all the obstacles they put in your / our path.

Hope if you complain to the right person you might get somewhere.

birkie profile image
birkie in reply to Wua13262348

Hi 🌹

I feel your frustration and pain 😔 we both seem to be in a vicious circle, we who have bad bowle disease just can't take any old thyroid medication, I was put on T4 immediately after thyroidectomy I felt awful, I got the info about thyroid medication containing lactose on here, the worst thing was my gp knew I was lactose intolorent it's on my file, I told him about the side affects but we're told to persist with the meds of course my bloods were awful, then managed to get T4 teva and still felt awful with bowels and stomach pains loose bowels, eventually put on T3, no bowle problems with it, my surgery have just refused T3, T4 blood tests I have no thyroid so T3 is essential for me but they don't seem to care, I can tell you it took me over 12 months to get my diagnosis of graves disease, I'm my mind my surgery were incompetent and I really feel my gp was not even doing any thyroid bloods before diagnosis as I'd seen him 4/5 wks before seeing the gp who diagnosed me so I'm sure when he told me my bloods were normal he can't have been referring to thyroid bloods.

It sounds like you have the same problems with your surgery as I do, getting prescriptions is a fight, getting appointments is a fight, getting blood printouts is a fight, I can't even speak to our practice manager.. She doesn't answer e mails or is just not in the surgery 🤷‍♀️ I honestly don't think any gp would let there loved ones be treated like this, the system needs a good shake up.. 😠I hope you can find the strength to fight on as this seems to be our only way of getting anything done😔 it's also exhausting and not good when we feel awful to start with, ❤️

Wua13262348 profile image
Wua13262348 in reply to birkie

As far as T4 levo goes, on reflection, save yourself the hassle of approaching your gp or their gp pharmacist if they have one to get your prescription marked *Glenmark only*. Yiur prescription will say levothyroxine sodium. Phone any independent chemists in your area, starting with the nearest first. Ask them if they have Glenmark in stock and they will just fill your prescription for you no hassle. If you want tell them it's the only one that is likely to suit you and why and they may offer to make sure they get it in for you. The independent chemist I got mine from said they don't always have it. It just depends what they can get. According to them it has been available for a couple of years, and is not new to the market. I told him that thyroid sufferers have only recently become aware of it, and when its existence becomes more widely known they are unlikely to be able to keep up with demand. I feel that my gp or gp pharmacist should have known of its existence and offered it when I had even been asked for copies of my genetic tests to prove I had a problem with lactose and mannitol. Absolutely no attempt was made to provide a suitable alternative. Mannose, from which mannitol is derived, I believe caused a Hashi attack in the first place!Had it not been for a couple of forum members mentioning Glenmark and providing info. about the supplier I wouldn't have known of its existence. One tablet of Glenmark later, I was aware that a human being is trying to emerge. I must not have been absorbing mannitol very well. I felt benefit as soon as I took it in a subtle way. Unfortunately, I think I need about 4 times the 25mcg I am taking, and gp unlikely to even give me 25mcg again.

If essential you have T3 other members seem to be able to advise on how to obtain by private message. I sincerely hope you manage to improve your situation. Other forum members will probably have personal experience and will do their best to help you.

UrsaP profile image
UrsaP in reply to birkie

My endo, who has never actually seen me in surgery, told me I could try stopping my t3 see how I got on, because HE couldn’t be confident of my diagnosis as I had just been referred to him (2020) I was diagnosed in 1991!!! Needless to say I declined that ‘kind’ offer.

I tried T4 for 20+ years and got more and more unwell. I won’t be going back on it. I would not stop T3 now, as I’m pretty sure if I did the endo would not reinstate.... Any excuse not to issue.

The trouble is we assume that these specialists are knowledgeable and have our best interest at heart. Sadly many are not that well trained in thyroid health, and often diabetes is their specialism. So they won’t know enough to be comfortable in deviating from the ‘guidelines’ and are more bothered about tick boxes than the patients wellbeing.

I would go back to your Dr and ask, if I probably have primary hyperparathyroidism, what does it mean and what can be done about it? Ask how you get a definite diagnosis. All this ‘probably’, ‘might ‘ is not good enough.

I’d suggest read up on it first and around it. What do you think, would this diagnosis fit your experience? Best of luck.

birkie profile image
birkie in reply to UrsaP

Hi🌹

I'm just so sick of the lack of care my surgery seem to be giving me🤦‍♀️

Firstly it's not the first cockup by them it took over a year to diagnose me with graves, and I presented with nearly every symptom😤.. The gp actually wrote in my records, " Karen thinks all her symptoms are due to her thyroid, they are not they are due to her menupausal state" 😠.. After thyroidectomy in 2019 I lost faith in endos and my gp I try my best not to get him now.. But in 2020 my calcium went over range twice that gp never told me and I blame myself for not seeing the calcium results on my print outs for thyroid hormones because at that time that's all I was interested in seeing how they where, when I did see the over range calcium coupled with the symptoms I was having! I asked my gp to send them to the endo.. She in turn requested PTH, calcium, vitamin D ( unfortunately they never did vitamin D 😠) but PTH was over range along with very top range calcium to which the first endo wrote saying I probably have primary hyperparathiyroidism but she then put me over to another endo who re tested me my PTH was even higher with an even higher calcium he wrote saying the same as the first endo it's probably primary hyperparathiyroidism 🤦‍♀️ so I thought "OK well let's get this sorted but all they have done is the watch and wait.. And now this other endo the one I saw first along with the gp is blaming the T3🤦‍♀️.. I did think this was a ruse to get me off it as it is expensive and my gp as reminded me on several occasions of this, I know my symptoms are definitely not related to thyroid meds as in 2004 I got a diagnosis of early onset of primary hyperparathiyroidism but after one normal blood test I was dismissed of course I knew nothing of primary hyperparathiyroidism then but to be diagnosed with it again in 2020 was alarming, I remembered 2004 and had the same symptoms, I've gone on to develop kidney /gal stones, ostiopein, lost 5 teeth, calcified tendinitis, calcification in knees, ankles, shoulder and heart, 😭 but still my surgery /endo are useless I passed a kidney stone in 2019 hospitalised and again endo is not phased, I presented my gp with the NICE guidelines on primary hyperparathiyroidism but that went nowhere, 😔my son is becoming increasingly worried as my health is deteriorating, he says I look the same as I did when I was in thyroid storm, just yesterday I scallded my right arm with boiling water god knows how I managed to do it but my strength just seem none existent, I'm so weak and fatigued not sleeping because I'm always peeing and the bone vibration is driving me nuts😢😢

UrsaP profile image
UrsaP in reply to birkie

That is horrendous. But it doesnt surprise me. Can you consider a change of surgery. Sometimes ot just takes a fresh pair of eyes. Keep fighting on. Wishing you all the best

Eliotf profile image
Eliotf

Get a new go and speak up tell her to stop doing the endo’s job. Become more forceful

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