Hi again everyone I had some great advice from you all yesterday many thanks❤️ I'm in the process of contacting my endos secretary to tell him my gp wants to take me off levo for 6wks.... I've just read the letter of discharge he sent which reads as follows,:
Thiyroid function test from 24th June 2019 showed a FT4 of 31,5 and TSH suppressed I can see that thyroxine dose has been reduced from 125mg to 100mg daily we should aim for TSH within the normal range please continue to monitor the thiyroid function and adjust the dose to normalise the TSH... This letter was sent from my endo who discharged me from his clinic without seeing me after my op sent to my gp.... What hope do I have when my endo is sending this info to my gp.... 🙄🙄🙄🙄
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birkie
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Six weeks to be off levothyroxine is rather drastic especially if your dose was reduced at the same time.
It seems he cannot be bothered (or is very busy) and has returned you to the GP who probably know as much as the endo, so we have to decide what we want to do.
When your blood test was taken, did you have the earliest blood draw? Allow a 24 hour gap between your last dose of levo and the test? If not your results will have been skewed.
Lowering dose should be done gradually as well, i.e. reduce dose by 25mcg every few weeks but you have to be careful you don't go too low on hormones.
I will also state I'm not medically qualified.
(there's no thyroid history in your profie, i.e. when diagnosed, with what etc (hashis or hypo).
I was diagnosed as hyperthiyroid/overactive thiyroid then put on anti thiyroid meds to which I had a really bad reaction then put on another anti thiyroid drug had a bad reaction also vomiting mostly as soon as it hit my stomach (carbimazol and PTU) my gp insisted I put up with it until my body gets used to it... Well my body never hence me going in to thiyroid storm because the drug wasn't working... Then I was given an uptake scan which showed graves with high anti bodies surgery was my only option as my thiyroid was toxic.. TT in May this year.. I've only had 2 sets of blood work done.. And they were 24 hours no meds on an empty stomach.. Earliest app in the morning.. My after care was done by my surgeon and gp.. My surgeon did my levo as follows:
Started on 125mg in may.. Had June 24th bloods reduced to 100gm
Next app surgeon refused bloods as he saw I was still hyper.. Still reduced dose to 75mg
Next bloods 23rd sep reduced dose to 50gm that's what I'm on now
Next bloods are due on the 6th Nov
As my gp said he will take me of levo then for six weeks to see what my TSH does... 🙄🙄🙄🙄
How awful that you had a thyroid storm which must have been frightening - to say the least. You ''have had your thyroid gland removed" and I think it's a pity they've removed your thyroid gland and then leave you floundering about trying to resolve your symptoms..
I am assuming both surgeon and GP are a bit out of their depth with someone who isn't responding as they 'think' they should be.
Those who have/had Graves will respond.
I do not understand why you've only had two blood tests after having your thyroid gland removed because (and I'm not medically qualified) both doctors seem to be fixated on your TSH alone and having your gland removed you cannot have 'normal' results- have they tested both Frees? i.e. FT4 and FT3. If you're not on thyroid hormones these will be low. You wont be having a normal life at present as your hormones are out of kilter
As we know, TSH isn't a thyroid hormone.
You should not, as a last resort, be searching the internet but as you've been left 'stranded' by both doctors you've no option.
I've no life at all I'm so exhausted no energy... No interest in life anymore its like my body's shutting down its a struggle to operate day to day... I will however fight on as best I can.. Doctors endos are not gods and they do get things wrong I'm keeping that in mind.. 😠😠
If doctors are paid (quite well I believe) and if you are in the UK, we the people have enabled these doctors to be educated, qualified etc. So, if unwell we do expect good and optimum treatment.
We don't expect to search the internet to substitue for Specialists but we seem to have to these days.
I'd even go to the A&E department. You don't have to give your whole story - is there another hospital you could go to? If so I think that's what I'd do. Your GP is failing you as he is relying on the surgeon. The surgeon is failing as you are being bounced about like a ball and not one coming to your aid. If you have your most recent blood test results put them onto a new post and see what others have to say.
Hi shaws and thanks again its so uplifting getting some answers from fellow people who have and are going threw thiyroid issues ❤️ as I said have only have 2 sets of bloods since my op in May.. I will post my results from both on here so you lovely people can help me evaluate them.. Many thanks❤️❤️❤️
Just a quick question my endo letter has another endo on it a lady would it be unethical to try to reach out to her instead of my endo I've not vevn seen since my op
I'd definitely ask for a referral - after all the Endo you saw wants nothing to do with you - could it be he doesn't really know much except to remove thyroid glands and then leave the patient in limbo as he expects GP to do the follow-ups (it seems to me).
I'm not sure of the 'ethical' way to go about this. Phone her secretary and tell her you are in desperate straights and need help and its not forthcoming since your gland has been removed.
I'm in a very small town in Whitehaven Cumbria I have to travel to the city which is a one and a half hour journey on a train then a taxi to the hospital... If I'm lucky he sometimes comes to another town half an hour away by bus.. Belive it or not I have a hospital on my doorstep but no endos work in their even when I was addmitted with thiyroid storm I had to get out of my hospital bed to go to see him at the community hospital half an hour away that will tell you how bad our service is.. I'm also on disability living allowance and the dreaded universal credit so my funds arnt great I'm so lost.. 😢
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
Most important results are FT3 and FT4. TSH is unreliable on Levothyroxine, especially after Graves
My vit D, ferritin, B 12 were tested results below... Sorry u must be sick of me by now... 😔
Serum vitamin B12 A normal.. 254 ng/L.... 197.00-771.00ng/L
Serum ferritin see gp/NP.. 17..ug/L...23.00-400.00
Serum total 25-OH vit D level.. 70..nmo1/L this sample will be held for 5 days following result is from 09-05-19.. And is valid for 365 days clinical details appreciated
When on inadequate dose of Levothyroxine, vitamin levels crash too low and TSH frequently drops.
Your Previous post thyroid results show you need dose increase in Levothyroxine
FT4 is only 18% through range
FT3 is zero % through range
Helpful calculator for working out % through range
chorobytarczycy.eu/kalkulator
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
How much Levothyroxine are you currently taking?
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
TSH is low because vitamin levels are so terrible
Your ferritin is absolutely terrible, so you need FULL iron panel testing for Anaemia. Likely to need at least iron supplements, but may need iron infusion
Iron is complicated.....you can have low ferritin but iron be ok. But you ferritin is so low it's highly likely your iron levels are too
Ask GP full iron panel to test for Anaemia
Also coeliac blood test as possible cause of very low iron and B12
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
Links about iron and ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
drhedberg.com/ferritin-hypo...
restartmed.com/hypothyroidi...
Post about iron supplements
healthunlocked.com/thyroidu...
B12 is far too low so you need testing for Pernicious Anaemia before starting on any B vitamins
Folate needs testing too as this works with B12
Has GP done folate test? If not request folate is tested at same time as testing for Pernicious Anaemia
Vitamin D is within range but many people on Levothyroxine find we do better when vitamin D is optimal. That's vitamin D at least around 80nmol and around 100nmol may be better
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Assuming coeliac test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Many, many Hashimoto's and Graves patients find strictly gluten free diet helps .......Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
I'm on 50mg daily... I've had 2 endoscopy as my endo said I was not intolerant to anti thyroid meds his never heard of it... He wrote to the doctor who was in charge of me on the ward and said I might have lymphoma... So I had one done in hospital then another one 2 months later.. no lymphoma but my colitis was worse I've been put in the care of an gastro specialist... I see him on the 7th of Nov.. I'm dreading the traveling I'm at the city hospital on the 4th of Nov and then on the 7th of Nov.. I did ask if these app could be on the same day as its an hour and a half on a train then a taxi to the hospital then back.. But they couldn't because their different departments... I live on a hospital door step just across my estate but we don't have any consultants on in our hospital its so screwed up I can see the hospital from my flat 😡😡😡😡
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Endo wants to increase.
Virtual (telephone) Endo consultation
Fuming with Endo
First NHS Endo blood test feedback... disappointing usual guff 🙄
Are my doctor and Endo correct that my TSH being suppressed is not good and I should lower my levothyroxine!!
