This is related to a previous thread which I think is being missed. I’ve reposted from new again.
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I’ve today finally reached the end of my patience and decided to book a private consultation with an endocrinologist who specialises in Thyroid and adrenal issues. I’m due to see them on Friday evening. My GP who didn’t take me seriously is sending me for an ECG for Bradycardia (even though that in itself is a symptom of hypo), although he did agree to write me a referral to see someone privately and save me the cost of a private gp too. I really hope I’ll be taken seriously as I must currently have over 75% of the possible symptoms of Hypo. Any tips for me on being taken seriously? My Tsh readings haven’t been sky high at 4.38 & late 3’s, but I genuinely feel absolutely terrible. I’m dreading a response of go away for a few months and we’ll test you again. I can’t currently concentrate, work and it’s putting some strain on my relationship with my girlfriend. I spent the day today in bed feeling awful.
Thanks in advance
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john_83
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I'm sorry you are feeling so poorly, and I hope you get somewhere with your appointments.
Do you have any other thyroid test results, personally I think that a TSH of 4+ is high but it needs to be viewed in conjunction with other thyroid results alongside the ranges.
If you don't have your blood test results try and get a copy from your GP and keep them along with any other information you may have regarding symptoms etc..
Also if you go to the thyroid UK website you can download and print a symptom list to take to see your Endo when you go for your appointment.
If you are paying to see someone privately I think it will be in your best interests to write down all the questions you have so that you don't forget everything, also take any blood test results especially if there have been changes over time and take a full list of all the symptoms you are experiencing, and don't be fobbed off if they say it's not your thyroid then ask what it could be instead.
I have found that it is really useful to write things down as it is very easy to forget what you were going to ask/say when you are face to face with the doctor.
You have come to the right place on this forum as there are lots of really knowledgable people here who will come along and give you good advice.
Really appreciate your reply. I’ll compile my list of questions for Friday. I have so many symptoms, it’s quite laughable. The GP I went to see about my thyroid armes with results showing my TSH at 4.38, has sent me for an ECG for Bradycardia. I then said to him that it is a symptom of Thyroid issues, he didn’t know, Googled it and said “oh yes you’re right”... still it isn’t your thyroid. I then reminded him that I’ve been seen by a specialist for Carpal Tunnel who confirms and wants to operate, he then said Hmmm, yes but again not your thyroid. I then also reminded him of my other symptoms: V low fertility, terrible brain fog, dull headaches, slow heart rate RHR - 45, body aches, fatigue, hair loss, low libido... he still said - not your thyroid. I then said, ok please can I have a referral to see someone privately because I think something is wrong. That’s where I am, and I visit the private endocrinologist on Friday. I’ll post my full thyroid results in the next post. Thanks
Well, I can’t give you advice, but can offer support. My TSH was 5.8 and I felt absolutely shocking- had to take 8 weeks off work and was incapacitated. I was started on a trial of 25mcg Levo by GP- and after being refused an increase as they have ‘strict guidelines’ another GP at the practice had no issue increasing to 50mcg.
I have been left languishing on this dose as am now in what is deemed normal range currently 2.8 TSH on last bloods, but they won’t test T4 or T3. However, am improved but still symptomatic.
I also went to private GP then to a private Endo like you only to be refused a further increase and told they may decide to take me off Levo as they believe I’ve had a virus. Seriously! And that they see people with TSH in the 100s and I couldn’t possibly be made that poorly with a TSH of 5.8.
Don’t believe a word of it! I usually function highly, gym, run, work a demanding job and run a house as a single parent- until this happened! Don’t doubt yourself. You know your body and listen to your instincts. This is exactly what I am doing and I’ll keep going until I find a medic who will treat it.
I hope you get the help you need and have an Endo that will listen. I think unfortunately, like GPS, many follow the same plan. I have no doubt an infection brought about the sudden onset of debilitating symptoms but I’d had abnormal TSH all year and looking back have been ill for a long time until I imploded.
I’m back to the private GP this week to see if he’ll prescribe an increase and am not going to waste any more money on an Endo (described as a thyroid specialist) who spent most of my last appointment asking about my mental health!!
Good luck for Friday and don’t forget to update here- I’ll be checking in!
Am sure those with detailed knowledge will help you on here as they have me
Many thanks for your detailed response butterfly1942, I’ll go on Friday and see what is said. I can be pretty stubborn and I know wen my body is out of whack. Something is definitely wrong. Pending a bad appointment on Friday and little help from the Endocrinologist, I’m contemplating going through a private prescription online of Levothyroxine. Anyone else experienced doing this? I’m self employed so for me there’s no option to take time off work. I currently can’t do more than an hour of work a day.
Out of curiosity, how long did it take for you to feel improvement in your symptoms when you started taking Levo? And have you considered an online prescription?
Well very very ill at start Then 25mcg for two weeks and no improvement then upped to 50mcg and changed brands to accord activas from Teva as was convinced having adverse reaction to fillers ( subsequently learnt that many don’t suit Teva- google on here) and further two weeks on 50s and started to feel more human. I did have better days but then took two steps back (still same now but not as dramatic. )I’ve been on 50s for 6 weeks now and just returned to work part time. Am sleeping better and still fatigued by afternoon- no where near normal but at least an off sofa. And I have had odd day/ evening where I’ve felt good. I’ve also had some bad sinus pressure ear fullness which hasn’t gone. No idea if this is viral and is taking time to improve because my adrenals are shot, or whether this is hypo related.
I’ve done the 6 weeks and have read most symptoms should go in this time if in the right dose so am convinced I need further hike in Levo. I’m prepared to try for further 6 and get new bloods- they are supposed to keep increasing until symptom free, or almost so this is where I am. I’ve not heard whether you can do on line prescription bu I’ll find out about this if I can’t get increase via private doctor today.
Ideally we ALWAYS Recommend getting FULL Thyroid and vitamin testing BEFORE Seeing any endocrinologist
But you won’t have time .....
Instead ask endocrinologist to test BOTH TPO and TG Thyroid antibodies
Plus EXTREMELY important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
These may be cheaper than testing via Endocrinologist
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
There is a history of HyperThyroidism in my family - mother and grandmother. Obviously I’m potentially hypo, so not sure if there is a link. No idea about auto immune history.
I did have my antibodies checked too recently:
Thyroglobulin Antibodies 15.4 (<115R)
Thyroid Peroxidase Antibodies 9 (<34R)
My diet is really good. Almost no meat, lots of veg, very little to no junk. Before my symptoms worsened a few weeks ago, I was at the gym 5 days a week and running too.
I had no idea Bradycardia was a symptom of hypo ? I also have that not completely sure what it is however. I just found it interesting that you said that. I really hope the endo can help you feel better.
Hi. I too have slow heart rate and low blood pressure and have had a number of blackouts. I’ve had every cardiac test there is and nothing was found. Cardiologist refuses to take my slow HR seriously, resting 53-58, sleeping 42-46 as she says they have people in their clinics walking around with a HR in the 30’s. Refuses to comment that mine was normal until 18 months ago. My thyroid numbers were in range but not optimal and I have many other symptoms so I’ve consulted a private thyroid doctor and just started a low dose NDT. Fingers crossed it works! Good luck with your appointment.
I got a private prescription for levo but it was very expensive. £30 to write the prescription and then £40 + a month for the tablets. Now I'm confident I buy my own at £3 a month.
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Should mum see an endo? Latest bloods
Overmedicated low TSH
Low T4, Normal TSH but symptoms
Low ferritin and tsh of 3 [0.5 - 4.4] on 37.5 mcg levothyroxine
TSH low the rest normal
