Hi everyone ❤️So I have now received my thyroid blood work after 6 weeks tyring to stomach 25micrograms T4 vencamil..🤢 as before I've suffered with all the side effects which highten when I went from 12.5 to 25micrograms the worst being the diarrhoea, cramps,sickness,headache, metallic taste in mouth, sweating fast heartbeat, I just feel so ill😥.
My last thyroid bloods done on 8th of April after no thyroid medication for 6wks [this was to see if the piece of thyroid detected on my 4D ct scan was producing any thyroid hormone]
TSH...69.47...RANGE..[0.30..4.50]
T3.....2.2.......RANGE...[3.10..6.80]
T4....4.3.......RANGE..[11.00..22.00]
safe to assume the bit of thyroid is not producing any thyroid hormone
I start on vencamil starting on 12.5 for 2wks then increasing to 25 for the next 4wks its been sheer hell and ive had to now decrease back to 12.5..new bloods are..
TSH..45.66
T3...3.2... it says on the report SATISFACTORY for T3..😡 I beg to differ
T4..10.5
Obviously I'm having the malabsorbtion issue because I'm having diarrhoea when taking the t4 , it says as it always does ..needs to increase medication ...HOW??? I struggled for 4wks on 25micrograms..anyway its something I need to discuss with the endo at my appointment on June 21st🙄🙄
But I also had rentals done
Serum sodium...[140]...RANGE...1.33..1.46]
Serum urea level..[8.4]..RANGE..2.50..7.80]
Serum creatine ..[108]..RANGE..49.00..90.00]
eGFRcreat [CKD-EPI] 1.73 M *2..[48]...RANGE..90.00..120.00]
Album...[50]...RANGE..35.00..50.00]
I can only hope this endo will understand I have persisted for 4 years with both synthetic T4 and T3 and I have never stomached it and it as never made me feel well.....NEVER!!!😡😡😡
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birkie
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No I've actually got my t4 in range and TSH but I struggled to keep on the amount, I have colitis and are lactose intolerant ,but T4 as never restored my T3 I've had the lactose free t4 and t3 synthetic meds , my gastro recently agreed its the synthetic thyroid medication that's the cause.Obviously my reanals aren't to good because of the malabsorbtion , I just can't stop the diarrhoea and sickness when on any amount but its worse when I increase 🤦♀️
My reaction on seeing your first results were 😵💫🤯 and DFG; second results were ☹️😲👀 and JW (I'll let you work out what the acronyms are! 🙃); and when I got to your renal function tests, I just 🥹 and felt 😩😠 and (as someone who has also been badly neglected/mistreated/just left over the years, including more recently being Dx as suffering from CKD, which was sneaked into my notes after I applied for both printouts of (still to be given those! 🤔) and on-line to results without me being told directly) just wanted to send you an empathic ❤️((hug))❤️
Keep fighting, don't let the b******** get you down and I'm so sorry I can't offer you anything more constructive but, I'm thinking of you and, like you, willing/putting it out there that you will finally get an Endo who knows what they're doing and put you back on the road to recovery and wellness. 🤞🤲☘️🍀🦋
Thank you PRJ20 like yourself I didn't know I had CKD until I received a letter from my surgery as I'd had 3 consecutive renal bloods done which showed my creatinine and eGFR were out of range. Truthfully I really don't know why they sent it ,because when I asked about it I was told.."everything is explained in the letter, you will require annual renal blood tests just to keep an eye on your levels.
The gp even saying [gp was male by the way and due to retire] goodness I'm 67 and my renal are around the same as yours, it comes with age I'm afraid 🙄
But I also know primary hyperparathyroidism effects kidney function which I have ,and I've passed plenty of kidney stones so that went over his head.
When is your endo appointment and do you know who it is with? I hope I have not missed your ‘report’ back to the Forum.
I am thinking about a ‘sit in’ immediately after your appointment if you remain unhappy.
Take some ‘supplies’ with you, in case it takes time for them to realise you mean business. Arrange for a photographer (anyone can do it) if/when you are ejected!
Hi and thank you for your reply, my appointment is at the Cumberland infirmary Carlisle with Dr FB pambinezhuth [ endocrinology].I have no idea what this endo knows ,it normally says what these Dr's are schooled in ..example ,on all my letters to endocrinologists it as said diabetes specialist and endocrine specialist, but this just says endocrinology beside the name and it doesn't even say if this person is male or female 🤦♀️.
I've had no luck with any endo I've seen over these last 4 years, the last one unbelievably putting me back on the awfull T4 medication to which she herself took me off stating it didn't work in increasing my T3, so it really angered me she put me back on a medication she knew would ,one effect me and 2 would not restore my t3 anyway.
Of course I challenged her decision but she told me there was no other option and she no longer wanted to deal with me and i should find another endo[ cop out] 😡.
Even my gp refused to go against her stating " I cannot go over the endocrinologists head I'm afraid "
She wasn't interested in my health one bit, so after being on the t4 for one week I took the photos of what I was passing poo wise [ diarrhoea] and showed her, also had bloods done some 5wks later which proved I was not absorbing the medication, so she arranged an appointment with another endo this one at Carlisle.
I just feel like on on an horrific road to hell, with no one in so called professional endocrinology or GPS helping at all .
I also have primary hyperparathyroidism and the day before this appointment at Carlisle I'm at Liverpool for a second neck ultrasound scan 🙈 there's so much going on with my health at the moment and I truly feel alone and lost.
Here's a link to that Endo Consultant, birkie, from the GMC Register who, as you will see, is female and also a Trainer (just click on the other links below - Trainer info and Doctor's history - and the underlined View details... bit to see all the details available).
Doesn't get you an awful lot further, though, does it...However, because there was a seeming gap in her GMC registration here, I also tried googling her full name from the GMC detail, which basically wasn't very helpful (unless you want to search through some long list for what could/could not be her for some sort of declaration of earnings registered in India?!!)...So, I tried again with the last part of her name omitted and came-up with an research publication she co-authored in July 2017, titled 'Epidemiology of Thyroid Cancer in Oman' (please don't panic when you see the title...read on) and which, as you will see, was published in the Annals of Endocrinology and Metabolism, so a definite leaning there to the Thyroid and not just diabetes. Not only that...
...But, as you also see at the foot of the page, when she co-authored the article she was "[practicing in the] Division of Endocrinology, National Diabetes and Endocrine Centre, Royal Hospital, Muscat, Oman", which would account for [at least some/? most] of her missing/lapsed GMC registration. So, please have some hope.
Just a couple of suggestions, too:
-- particularly if you don't have anyone to go with you (and my hope is that you will?) and even if you do this could well apply/be worth trying after all you have been through and subjected to, try contacting PALS at both CIC and Liverpool (links to follow) and:
-- ask for more details about the Endo Consultant you're seeing at CIC, as well as their/someone's support during the appointment - link to CIC PALS👇
-- ditto re asking for support from PALS (or PACT as they're known as at the RLUH, which is the second link with first being for Aintree Hospital as I wasn't sure which one you were attending) - links here👇
Other than that, I second what arTistapple suggested, particularly if you get no joy from the above suggestions. Oh, and btw, I actually did my General Training in Carlisle at the old/original Cumberland Infirmary many moons ago (the early '70's) and...now live in Liverpool (going to PM you)...Please, please don't feel you're alone, keep posting/keep us in the loop how you get on and sending you another ❤️((hug))❤️🦋
Finally, just for you, a meme I found during my google searches for the Endo but, this one from a Clinical Psychologist with a similar [partial] name but spelt differently, which I felt summarised what we all need but, you really, really need in spades for your appt with this Endo...A good omen...☘️🤞🍀🦋
What we all need from Dr's of all persuasions... :-)
Sorry for my late reply, not to good atm😔 ..thank you for all that info you kindly posted for me, obviously I got the wrong details when I googled the name 🙈 I'm really hoping my son can come in with me, although he will need a bit of coaching on the subject but he can concur just how ill I look, and how I've never really recovered since my thyroidectomy. I'm having my scan on my parathyroid glands at Liverpool University hospital [21st june]
Well one good thing [ 🤞] it's a woman, but I know that can mean diddly squat with endos, but as a peice of thyroid as been identified in my right side above the thyroid bed which was not there in 2020 the surgeon in Liverpool thinks this as regenerated 🤷♀️ although we are now sure it's not producing any thyroid hormone.
But funny enough it is very much like my thyroid when I had it, it throbs and my voice as gone croaky again and I get a sharp throbbing pain there.
I suppose my only hope is the endo 1, reads all my relevant blood results and notes, including my parathyroid bloods and scans👍 because my health does not only include me struggling with thyroid medication but suffering with primary hyperparathyroidism also.
birdie I thought you were coming to Newcastle for your appointment. Anyway hopefully this new person might be a breakthrough. They are not very good really at batting for us.
I was going to Newcastle but due to being so unwell and the fact I'd already spoken to an endo at Newcastle during covid who was useless ,I was afraid I'd get there and be seeing the person I'd spoken to over the phone🙄 so my gp got me one closer to home.And the worst of it is.. my son passed his driving test so he could have actually driven me there if the appointment came a bit later but I had to change it I just couldn't see myself travelling to Newcastle and Liverpool 😢 but thankfully my appointment at Liverpool is on June 20th endo is 21st but my son is driving me to both appointments now..🥵🥵🥵.
I can only try and see if this endo actually knows his onions🧅🧅😂😂😂😂😂😂
My daughter's boyfriend became ill and they found high calcium levels and a kidney stone blocking his kidney. A scan showed a tumour on his parathyroid. For reasons only they know, they put in a stent and then a drip to bring his calcium levels down, which it did, until they took the drip away. Eventually he had a 2nd scan to confirm his tumour and found a second one so, long story short, he finally had both parathyroid glands removed leaving him with 2. He however still has then and presumably the kidney stone. His calcium levels appear to be stable.
Given his very similar symptoms to yours, maybe you should press for some sort of action on your parathyroid? I likely won't resolve on its own. I wish you luck with the new Endo, it's a bit blerdy much that you are having to traipse round the country to try to find a fix. Fingers crossed this one is better informed.
I've been diagnosed with primary hyperparathyroidism, it's just a case of trying to find the little gremlin , I'm down Liverpool again for a scan next Thursday 🤞but again the nhs won't operate until they aquire a target , and seeing as I've already had invasive neck surgery [full thyroidectomy] they don't want to be causing anymore damage to my vocal cords ect,....but here's the kicker ...if I had 11 thousand quid I could go private and have a surgeon go in at my permission, beggers belief 😡 personal I just think the nhs do this so you get so desperate you will choose to go private if you can afford it,and I don't blame those who do👍
It doesn't seem to be getting any better. I don't know about them wanting us to go private, I've asked for a private referral for an X-ray, it's over a week since I put the letter in, not even an acknowledgement. I wonder what they do all day!
I went private to a parathyroid surgeon in Oxford I just got his name from our parathyroid site contacted his secretary and he arranged to see me, cost my son £800 but it was so worth it as he sent me to Liverpool, and the lovely surgeon who was nhs not private diagnosed me..something the endo in my area couldn't do she just refused to look at my blood work, same as thyroid she refused to look at other thyroid meds, other that t4 knowing I have a bad reaction to them...hell it was her who took me off them then put me on t3, then took me off t3 and put me back on t4😡...and to think these people went to university to get there degree in there subject 🙄
First and foremost birkie you are not alone. Many of us on here care about you, and wish you better help in managing your health.
Have you considered Googling the upcoming endocrinologist? You should find info that will help you understand in which field of endocrinology they are a specialist.
Has anyone thought to consider NDT for you?
In the meantime count yourself gently well hugged. xx
I will Google their name👍 as for NDT I asked the last endo why on earth would she put me back on a medication she herself said didn't work for me? And could she perhaps think about a natural thyroid medication NTD.She told me in no uncertain terms that she would not recommend NDT as there is not enough study conducted that it actually works.
I asked her "was this particular drug not available in the late 1800s ? If so I think it's been around a very long time and I'm sure it was the first drug used for underactive thyroid conditions ,before the synthetic version became available "
Whoooo...I knew to much stuff 😄...she told me in a rather stern voice she does NOT recommend NDT and would never prescribe it.
End of consultation , I either take the t4 she as prescribed or I can go to another endo 😡 quite frankly she is the worst endo I've ever come across and I'm very glad she does not want to see me again, as i will wear this as a badge of honour 🎖
I'm going to mention NDT to this endo on the 21st June at Carlisle but I know its very hard to obtain it from the nhs endos, but I've persisted for 4 years now on the synthetic version and I feel awful, so something as to be done👍
Oh I don't know if she's quite the worst 😉 I saw a female Endo at Chorley who told me she thought the reason I wanted a diagnosis of hypothyroidism was to have an excuse for being fat! I still can't get a diagnosis despite my symptoms because my bloods are in range. T4 has bounced along the bottom for several years, TSH rises a bit more at every blood test, etc etc. I've seen 4 different Endos, all diabetic specialists and got nowhere.
Just googled the name...its a male and he is a diabetes specialist first then endocrinology 🙄 he as also wrote in the journal of clinical investigation into men with diabetes, doesn't sound a good bet to me, don't think he will be much help in my case🤦♂️
The endo I see privately for thyroid is also a consultant endocrinologist for the NHS. When I Googled him diabetes came up first followed by thyroid......so there is hope your new endocrinologist may know his thyroid "stuff".
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