I'm even more confused than ever!

[Jojozo]

Hi everyone, some members very kindly responded to my post below last week.

healthunlocked.com/thyroidu...

I have just got the results of my latest blood test from my GP and she has told me that I need to up my TSH level. She said in order to do that I need to lower my Levothyroxine from 100mg/125mg (I take the 125mg twice a week on my GPs instructions) to a flat 100mg.

My readings are:

Serum free T4 level: 16.3 pmol/L (11.1-22.)

Serum TSH level 0.07 mu/L (0.27-4.2)

That goes against the advice I was given on here, which I place more value on, but she is quite curt and I really didn't have the strength to argue today. When I told her I feel very unwell and I am putting on weight despite not overeating (some days I have bad nausea and probably don't eat enough) she then said she was stopping my 25mg repeat prescription so I can't take them (I felt like a naughty child).

I didn't say anything about my low-temperature readings, which are still averaging around 35.5 every day, because I suspect she will think it's all a bit woo-woo.

On the plus side, she is writing to haematology about my elevated B12 levels, which have been raised for about seven years, despite me not supplementing/eating red meat, etc. The result of the last private test I had done is below:

Vitamin B12 - Active >256 pmol/L (25.1 - 165)

I am suffering from bad flare-ups of very painful gut issues, which she says are down to IBS. These often coincide with a painful crop of mouth ulcers and very low energy/mood, so this could be a separate issue. I am gluten and dairy free.

Any advice would very welcome. I really don't know what to do for the best now!

[jimh111]

With your below average fT3 and fT4 your TSH should be much higher. Your TSH is not reflecting your thyroid status and so cannot be used as a marker. If she cannot understand this she should refer you on to someone who can. A doctor should not work outside their level of competence - it is against GMC rules. Take someone with you to your next appointment so they can stand up for you and give additional support.

[Jojozo in reply to jimh111]

Thank you. My GP referred me to a CFS clinic and they refused to accept me based on my thyroid results being irregular. However, the endocrinology clinic discharged me two years ago saying there was nothing wrong. So I am not welcome anywhere 😅

[jimh111 in reply to Jojozo]

Oh dear. I'm tempted to use bad language. You could perhaps try contacting the PALS group at the hospital and politely say that you feel you have been incorrectly treated, that you inconsistent blood test results have not been investigated. I get the feeling that the problem lies with the endocrinologist and the disease spreads to the GP.

[Jojozo in reply to jimh111]

I agree. In almost 30 years of being treated for endocrine issues, I am yet to see an NHS endo who hasn't been dismissive. It's sad but I do feel like often the only way to be truly heard these days is by paying someone who has the time to listen.

[humanbean]

Regarding your high level of B12 this link may be of interest :

Title : The pathophysiology of elevated vitamin B12 in clinical practice

Link : academic.oup.com/qjmed/arti...

[Jojozo in reply to humanbean]

Thank you!

[greygoose]

Your GP needs reminding that she is not there to dictate to you, like some omnipitent god, she is there to advise you. You are not obliged to take her advice. Your treatment should be decided on by consultation, with you giving your informed consent. Personally, I would write a letter of complaint to the practice manager about her condescending manner, lack of comprehension and dictatorial attitude. She does not have the knowledge or understanding of thyroid to treat a hypothyroid patient.

[Jojozo in reply to greygoose]

Thank you. I know they're under massive amounts of pressure and it's a truly terrible time to be a GP, but I did feel like I was being told off, as if she thought I was going to sneak around behind her back and still take it. It was a phone consultation, which is always trickier. She is generally quite helpful but maybe she's a bit exasperated with me (as am I!) or having an off day.

[greygoose in reply to Jojozo]

That is no excuse for treating people like that. And, if I were you, I would sneak around behind her back, buy my own levo and self-treat! There is no justification for lowering your dose. She's just too ignorant to be doing her job.

[Jojozo in reply to greygoose]

I'll be honest, I am thinking about it. I'm also thinking of branching out and trying a different brand. I've been on Levothyroxine for so long and it may be worth experimenting to see if someone else suits me better.

[greygoose in reply to Jojozo]

Yes, I agree with you, it probably would.

[birkie in reply to greygoose]

Well put greygoose 👍 gps May be very busy... But I certainly haven't seen this as everytime I've gone to my surgery it's empty, I was at my local hospital last week for blood tests, it was also empty, not one nurse in the corridors, not one doctor, didn't even see a porter, yet when I was in hospital in thyroid crisis in 2019 it was buzzing, and I have found gps and endocrinologists being obnoxious and rude, I got one on Wednesday last week who although as prescribed me liquid levothyroxin,👍 became irritated by all my questions she couldn't wait to get rid of me😤😤😤😤

[Josephineinamachine]

Hi have you been investigated for Chron’s disease? Or ulcerative colitis? Sometimes that can be missed and put down to IBS? I have just been diagnosed with diverticulosis disease which was put in the IBS bin for a while…?

[Jojozo in reply to Josephineinamachine]

I has some tests about four years and I was diagnosed with gastritis, but I get terrible bloating and a burning sensation in my lower abdomen as opposed to my stomach, so I have no idea what's causing that (neither does my GP!). She kept saying, "It's IBS!" I politely pointed out that even if it is, something must be causing it, but I didn't get anywhere.

[Jojozo in reply to Jojozo]

p.s. Sorry to hear about your diverticulosis. I hope you're not feeling too awful.

[Josephineinamachine in reply to Jojozo]

I think you should push for further tests, especially if you have mouth ulcers as well Jojozo. I had pain and they moved quickly but it may be that I’m post menopausal so I think they initially suspected something going on with the uterus. Keep pushing them if you can!

[Jojozo in reply to Josephineinamachine]

Thanks so much. I had a full hysterectomy last November, so at least uterus problems can be ruled out! The gut issues have been going on for years but I’m genuinely too scared to ask for further tests. It seems like the GP feels she’s exhausted every avenue and her attitude suggests she thinks I’ve got health anxiety, but I can guarantee this isn’t all in my head. My oestrogen levels are on the floor post-op so that’s probably not helping (I have been on oestrogen HRT but l my body doesn’t absorb it properly, so I’m looking into other options), but I always get the mouth ulcers when my gut is bad. And they travel in packs!

[Charlie-Farley in reply to Jojozo]

Doh! Sounds like this doctor gets lots of ‘off days’. Being constantly presented with patient issues they have not a clue about can do that to a GP. Perhaps they need to stick to corns and verrucas 🤔

Perhaps time to have a hunt around for a new GP. Thyroid UK hold a list of thyroid friendly Endos. Some apparently are NHS?

Time to change the team? But also time to start reading round on your condition so you can hold your when they push back. ❤️ It’s hard work to start but as you get used to the terminology it does get easier. I’ve been throwing myself at this subject for a year and a half and I was holding my own with GPs at my local surgery within 3 months and knew, what I would consider, to be little, but turns out enough to tie them up in knots.

GP general practitioner - it really does mean what it says . They have not the time to read up on every condition. 😊👍

[Jojozo in reply to Charlie-Farley]

So true! I know their job is really hard but it’s so frustrating when you kind of know they’re wrong but don’t know how to say it. I definitely need to do more reading and get my confidence up around the subject. Thanks for the tip about the endos too, I’ll have a look.

[Charlie-Farley in reply to Jojozo]

Hi again Jojozo

Yes it’s hard at first but to get perspective I always reverse roles. I’m pretty sure if I was suggesting something deleterious to their health they would have plenty to say about it! 😂👍

I find challenging them with science and the latitude written into the NHS guidelines is very effective. I’ve mapped my journey on my profile and discussed how I did things if you fancy a read. I’ve used everyday analogies and a bit of humour to make it less dry. 🤪👍

[Jojozo in reply to Charlie-Farley]

Oh brilliant, thankyou, I'll head over for a read. I concur with everything you've said!

[Jojozo in reply to Charlie-Farley]

So, I spoke to the hormone nurse at my surgery yesterday. She agreed with my GP and said my serum T4 level is perfect but my TSH is way too low, which will put my heart and bones at risk 🤷

[Charlie-Farley in reply to Jojozo]

Hi Jojozo😊

So have they no idea how your FT3 is?? After all ….. it’s an extremely important hormone for heart health…… they can reduce your medication to try and get an ‘in range’ TSH but will most likely leave you hypo, exhausted and suffering side effects, perhaps unable to exercise (bone density also dependent on load bearing movement). They fall into the trap of treating the blood work not the patient. And then using the incomplete picture of an NHS blood test. 🙄

There have been scientific papers posted in this forum re unreliability of TSH and research from a cardiology perspective, recently published. I’m not sure if a word search will tease them out. Might be worth a read? At the end of the day you have to ask yourself, when your doctors and nurses working at your local surgery finish for the day , do they have time to read and keep up to date with every condition they have to deal with? If you have read all of the latest NHS guidelines around treatment of thyroid conditions good chance you are more up to date than they are.

They are not experts, though frequently ones I have come across masquerade as such and that is my only but main criticism. Though if you think about it fairly all encompassing.

For me reading up on my own condition and taking responsibility for it has been a necessity since being made very ill by a GP who thought upper and lower figures in ‘the range’ were simply goal posts and she was topping me up with Levothyroxine. Both false assumptions 😱

I have read a good book, written by somebody with lived experience and lots of lived experience on here, the benefits of which can not be underestimated and of course the inevitable 😬 read a few scientific papers - then retire to a darkened room to burble a bit - papers are info dense and hard going at times🤣 highlighter and note pad job.

You can just take their word for it of course 🤔

Hmmmm 😱😂

[Jojozo in reply to Charlie-Farley]

Thank you so much and thank you for your reply and sorry for my late one - I'm in bed feeling very unwell. Fatigue, muscle aches, stomach cramps, chronically bad trapped wind, low temp, nausea, low mood - all the usual treats! I think it's my adrenals but the thyroid situation probably isn't helping. It's okay though because I can get an appointment with my doctor in a week's time 👍😀

[Charlie-Farley in reply to Jojozo]

🙄 oh Jojozo ❤️

If your adrenals are flagging your thyroid situation will feed into that. Adrenals pile in like a good friend to support a flacking thyroid, but this can exhaust the adrenals over time, so it’s imperative that the thyroid is sorted.

There is an axis of H-P-T - Hypothalamus - Pituitary - Thyroid

Systems of communication and regulation.

The pituitary produces thyroid stimulating hormone which is in turn activated by a hormone from the hypothalamus which I can’t remember the name of but you get the idea.

However if your adrenals are flagging it makes even more of a nonsense using TSH as a measure because how can one possibly know it’s reliable? Surely the first assumption be that the pituitary is functioning normally. On first principles it is such a flawed measure anyway.

[birkie in reply to Charlie-Farley]

Hi Charlie-farley❤️

I've taken the same attitude lately, although this is related to 2 endocrinologist writing to my in 2020 after I had 2 over range calciums.. 2.61..2.67) endocrinologist got involved and requested Parathyroid /calcium /vit D.. (Range for parathyroid (1.60--6.90).

First lot.. PTH... 8.1..cal..2.51..no vit D done🤦‍♀️

Second lot.. PTH.. 9.5..cal.2.54 no vit D done🤦‍♀️

---------------------------------------------

The definition of an over range PTH with a top end in range calcium is (normocalcemic hyperparathyroidism.)

I pointed this out to the endo at my appointment last week, saying do these 2 tests not show normocalcemi hyperparathyroidism? Her answer "NO" I asked her to explain why when the pth is over range and calcium is top end but in range, her answer "you don't have any problems with your parathyroid glands, since then my last test was pth 6.6..cal..2.49 both at the top end.. She just closed down the appointment, but hey! she did prescribe me liquid levothyroxin due to my gut issues, so I'm claiming that as a win.. Now it remains to see if my surgery agrees to prescribing it.. 🙄

[Charlie-Farley in reply to birkie]

Oh my goodness 🙄

I sometimes think they would have more success playing darts in the dark. Frightening for those who can’t get to grips with their own situation isn’t it? I have very pleasant Mexican standoff with my surgery now. They just moved the date forward for a review without seeing me. 😂👍

[birkie]

Hi Jojozo❤️

I know only to well how you must be feeling, my gp did the same to me she decreased my T3 from 40mg to 30mg on these results.. T3 6.4..TSH 0.05..(i have no thyroid) she never took advice from any endocrinologist on this decrease, I asked her if this amount of 30mg would not perhaps make me slightly hypo.. "no you won't go hypo she snapped" well I did!! She obviously had a fit when she saw my TSH at 0.05...trying to explain to her over the phone 😤 that I was now hypo, and if she had just left my T3 medication at 40mg I would now not be in this position , and a TSH of 0.05 is OK as I have no thyroid 🤦‍♀️.. I couldn't believe here answer.. "you cannot have had a full thyroidectomy as you are producing thyroid hormones hence the reduction in the t3 meds,... I HAD FULL THYROIDECTOMY IN 2019, flipping hell I should know 🤷‍♀️and if I was indeed in any doubt, its in my medical records.. Full thyroidectomy in May 2019... I don't deal with that certain gp now🙄🙄 mind you there's not many gps left I CAN deal with😤😤😤

[Jojozo in reply to birkie]

Hi Birkie, sorry for the late reply, I've even under the weather and sleeping A LOT (hmmmm). I'm sorry you had such an awful experience. Are you seeing an endocrinologist now? Surely they must have referred you? I'm slowly making my way through all the GPS in my surgery trying to find one that gets it 😅

[Jojozo in reply to Jojozo]

I've just seen above that you're seeing an endo now. I hope the liquid version works better for you!

[birkie in reply to Jojozo]

Hi❤️I've been bad now for the last 4 weeks, vomited, sickly feeling, totally fatiqued, sweating bad, shaking😢

I saw the usless endo on Aug 3rd, as I said she prescribed liquid levothyroxin, but I'm still waiting for her secretary to do the letter to my surgery, she says she is a month behind writing to surgerys.

She is covering for 2 endocrinologists, I did feel for her but that doesn't help me as I've been hypo since the end of May 😠.. Dr decrease my t4 (which I should not be on as it gives me bad side effects only agreed to go bk on it as gp said all my symptoms were due to T3.. They are not because after 3 months of being off T3 my symptoms are still with me.. Frequent toilet trips especially though nite 😢 total thirst, bone pain with awful vibration, headache, palpitations, nauseated, vomiting, ( these symptoms are of hyperparathyroidism for which 2 endocrinologists said I probably have, but are dragging their feet, what's new!! 😠 So now I'm hypo and having symptoms of hyperparathyroidism to boot, only light on the horizon is I'm speaking to a parathyroid surgeon on Wednesday who works in Oxford, I've sent him all bloods, diagnosis, ostiopeania, kidney stones, calcification in most joints, and heart, lost 5 teeth, so it will be interesting to hear what he as to say.. As my last bloods were PTH.. 6.6..RANGE.. 1. 60..6.90..

Cal..2.64.. adj.. 2.49

This is considered as a bad relationship between parathyroid hormone and calcium, as both are at the top end and I've had 4 like this with 2 PTH over range, thyroid conditions are hard for endos to comprehend, Parathyroid conditions are way out of their league 😁😁

[Jojozo in reply to birkie]

Oh my goodness, that all sound awful. I really hope the parathyroid surgeon can help. It’s been a horrible journey for you. I don’t understand why there isn’t more help for these conditions unless you are able to pay a fortune to go privately.

[birkie in reply to Jojozo]

yep.. Just sitting here waiting on the surgeon to contact me, woke up this morning at 5.23 after 6 trips to the toilet through nite🤦‍♀️😤😤, I'm absolutely shattered, feeling sick, bad headache sweating😤 I'm trying my best to stay awake, so I have some clarity when he calls, pen/paper at the ready, blood test printouts ect beside me... Hell I've to carry my phone back and forth to the loo just incase he calls because I'm never off it.. 😂