Almost excited!: I was finally telephoned today... - Thyroid UK

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Almost excited!

Espeegee
Espeegee

I was finally telephoned today and offered an appointment with the Endo at Salford Royal after waiting 4 months from GP’s referral. I am going on Thursday. Now of course I hardly know what I should ask! I think my GP wrote a reasonable letter and included a few of my symptoms but there are more and other things. Can anyone give me advice on what to ask and tell her? My NHS tests are always “normal” but the two sets of Blue Horizon pointed to a developing hypothyroid. I know my GP included the BH results with her letter so I’m hoping she will get a clearer picture. I find the whole thyroid issue so complicated with lots of different aspects which could mean one thing but not another. My main concern is my inability to lose weight, my tiredness, my shortness of breath and of course the high ferritin level which may or may not be related. I have a food diary, a temperature chart I kept for a while and relatives with thyroid issues.

53 Replies
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Please tell me how it goes! It looks like a wonderful department- I wish I was going there! Xxx

A few ‘resting pulse’ measurements could be useful. Hypo patients often have lowish pulse rates along with lowish temperatures.

Espeegee
Espeegee
in reply to m7-cola

I have many of those on my Apple Watch data records. I think my lowest was 36! It’s regularly down in the 40s. I’m hoping to show those records too.

Kipsy
Kipsy
in reply to Espeegee

Wow! Those are low. Definitely mention them to the endo. I’m now optimally treated (T4/T3 combo) and my resting heart beat averages 63 according to my Fitbit.

Kipsy
Kipsy
in reply to Espeegee

Just a thought...my endo appreciated me typing out a table of all my results and dosages and especially the columns that showed him how far through the range my T4 and T3 was for each test. When he saw that my T4 was just over range but my T3 was only 3% through the range and my TSH was suppressed, he prescribed T3. I know you’re not at that point yet but anything you can do to make it easier for them to see what’s going on at a glance can be helpful.

Espeegee
Espeegee
in reply to Kipsy

I agree 😉 I’m not medicated at all so she will have scope to experiment lol. I intend to hit her with everything I’ve got, I see this as my one opportunity to get this sorted. I woke up with a 4 paracetamol headache this morning not for the first time, I don’t want to spend what’s left of my life watching it slip away while I sit around too tired to make the most of it. I try my best, dog walk every morning, personal trainer twice a week, yoga when I can but I feel I should be able to do lots more than that.

Kipsy
Kipsy
in reply to Espeegee

Yes you should.

Headaches are a symptom of hypo- one of the first things my endo asked about.

Good luck.

Good luck sounds like you are well prepared, hope they are thorough with you

Hi Espeegee

If you look at Thyroid UK website they have a printable sheet which lists all the symptoms of Hypothyroidism, you could tick any that you have and take it along to your appointment, there will be less chance of you forgetting any if you have gone through the list prior to your appointment.

There is also space for you to add any extra symptoms.

It might be useful to take you temperature every morning for a few days on waking then calculate the average. ( It is called your basal temperature)

Take it before you get out of bed or have anything to eat or drink, or even go to the loo, and make a note of it. Prior to starting on Levothyroxine my average temperature was around 35.4º on waking. Since starting Levothyroxine it has risen to an average of 35.8º on a couple of occasions it has even reached 36º, I also don't feel quite as cold.

Good luck with your appointment, I hope you have more success than I had in Liverpool just before Christmas.

:)

Espeegee
Espeegee
in reply to knitwitty

Yes, I have a chart I made a few months back and a longer one made a few years ago they could be both from the same time they’re so similar. I work in Fahrenheit lol but I’ve only once made the “normal” temperature.

I will be printing the list off, I don’t want to bowl her over with info I just want her to actually look at it and evaluate. If it doesn’t fit with hypo then I’ll be happy that at least someone in the know has looked, the one I saw at Chorley was totally pants, didn’t look at the temp chart and dismissed the private blood test 🙄 and said she thought I wanted to be hypo so I had an excuse for being fat.

knitwitty
knitwitty
in reply to Espeegee

Hi again, it's quite scary how little some of these doctors seem to know about thyroid problems, maybe if we were sent to actual thyroid specialists in the first place that alone would save the NHS a small fortune in repeat appointments. The twits that we see on the first, second or subsequent occasions don't seem to have the faintest idea what they are talking about.

Sorry, rant over, good luck in Salford, let me know by PM if you saw anybody worth seeing as I may need to pay them a visit in the future.

:)

Espeegee
Espeegee
in reply to knitwitty

I’ll be shouting out from the hill tops if it’s a positive experience lol.

That’s an AWFUL thing for them to have said. I hope this appointment goes much much better.

vocalEK
vocalEK
in reply to Espeegee

I work in Farenheit, too. When my temp is "normal" (98.6), I actually have a fever.

Hope it goes well

I am amazed you are seeing an Endo as I have had Hypothyroid for 20 years and never been able to see one!

Make the most of it. My GP refuses to refer to an NHS endo for hypothyroidism- after all, it’s very common and easy to treat right? Instead, I assume he keeps lots of people ill! For an endo to say to you that you want to be hypo as an excuse to be fat is one of the most outrageous and insulting comments I have ever hear - and I find it personally insulting as someone who is hypo. Why anyone would wish such a debilitating illness on themselves that is so difficult to treat properly so they can be fat is beyond my understanding. And not all hypos put on weight. You really ought to complain about her. Clearly another accomplished endo operating within the system with no empathy or understanding of hypothyroidism. Better luck this time. Keep us posted. 🤸🏿‍♀️

I hope all goes well at your appointment. I look forward to hearing about your experience. I don’t live too far from Salford so if I decide to push for a referral to an Endo it would be helpful to know if she is knowledgeable about thyroid. Good luck and fingers crossed for you, JCMK x

Espeegee
Espeegee
in reply to JCMK

I chose her because her online reviews were all positive and suggested she focuses on thyroid issues 🤞🏻

JCMK
JCMK
in reply to Espeegee

Have seen your update re the endo no longer being at Salford Royal. That’s a blow, if you do decide to go to the appointment anyway, I hope it is a positive outcome.

Hi there. I see an Endo there. Do you know who you will be seeing?

Happy to discuss privately my experiences there.

Please post you blood test results with the ranges on here for answers. Did you take the test first thing and fasting.

Good luck with your appointment I have seen many Endos but the only way I have become well is joining this site posting my results waiting for answers and then self medicating.

Espeegee
Espeegee
in reply to Bunnyjean

I have done that a couple of times here. 2 results from BH show a developing hypo problem. GP didn’t know how to deal with them as of course NHS interpretation was normal. She was prepared to help if I suggested something but I’m not up to speed enough. I feel an experienced endo should be able to decide what is my most likely diagnosis, whether for example it’s more a pituitary problem, central hypo has been suggested.

healthunlocked.com/thyroidu...

Here are some.

Bunnyjean
Bunnyjean
in reply to Espeegee

Yes I have only found the one from five months ago. Your ferritin was way too high, some sort of infection maybe, anyway good luck.

Now totally gutted. Appointment letter through confirming my appointment, I am not seeing the Consultant I asked for but a man and guess what? He’s a diabetic specialist 😡😢 and the clinic is in the diabetic department. Crying here just so upset I feel I might as well cancel, Salford isn’t exactly round the corner to me.

Just checked their website, the Consultant I wanted to see is no longer on it. Can anyone pm me if they have any info on Dr Akheel Syed. Does he deal with thyroid?

Can you phone the department up and talk about this switch? Tell them you specifically want to see the endo you chose and see what they say? If she's moved hospitals they should be able to tell you that as well. She has to be somewhere around.

It's rotten luck. I have recently had an endo appointment. I waited 4 months from the referral. I choose Oxford as it has a good reputation. I saw a young man. He wasn't very interested. He said my weight couldn't be a thyroid issue because my numbers weren't bad enough! He should try living my life. He did rule out Cushings or Addisons, which was the reason the GP referred me. But he was no use to me on thyroid at all. I am just proceeding with my own treatment. I have Levothyroxine from the GP and I am buying T3 and introducing that. At this point in time, in this country, I don't think there is much else we can do unless we are very lucky to hit a thyroid doctor by chance.

She has definitely left the NHS, she isn’t on their site and before when I searched the internet she was shown there, now she isn’t. She works privately at the Spire and the Wilmslow hospital. That will be my next step. She has another practice via a web site, don’t quite know what to make of it though. fatiguewise.co.uk

knitwitty
knitwitty
in reply to Espeegee

Thought I'd butt in here following your reply above.

There seems to be something quite sinister going on in the NHS at the moment.

I was referred to T3 "friendly" consultant in Liverpool just before Christmas. When I attended the clinic he too was not in attendance.

I was told I might benefit from T3 due to poor conversion, however, the CCG will no longer prescribe it under any circumstances, it was suggested that I could see the consultant I had been referred to at the local private hospital who would write me a private prescription which I could fill here ( Currently £360 per month ) or from Germany whilst we are still in the EU (€30 for 100 tablets) or I could source my own from abroad. In all these circumstances the hospital, who would not prescribe T3, would monitor me.

I am still waiting for the letter detailing results of the blood tests they did, I will take this further if they even hint at the fact that I might benefit from T3.

What the hell is going on??!!!

Espeegee
Espeegee
in reply to knitwitty

Well that's blerdy big of them! Honestly, if you can source T3 for €30 why can't someone in purchasing for the NHS do the same? It beggars belief that they'd refuse to supply it because their supplier is robbing them yet not source an alternative supply and tell their supplier to do one!

knitwitty
knitwitty
in reply to Espeegee

I know, you couldn't make it up could you?

It makes you wonder who is benefitting from the present situation, I also think it's about time consultants were made to choose between working for the NHS or the private medical sector. They seem to gain all their experience in the NHS then take their skills to a private hospital, which pays nothing back to the NHS for the experience and training they have procured. It has been said before that you cannot serve two masters equally and in some medical fields the NHS seems to be getting the short straw.

Espeegee
Espeegee
in reply to knitwitty

Well, not entirely accurate, if they choose to see private patients in an NHS setting (and a lot of them do) they have to pay a fee to the NHS for the use of the rooms etc. If doctors had to pay to train privately I suspect it would be prohibitively expensive because what a doctor needs most whilst training is hands on experience and plenty of variety, they get that working in the NHS. If that were to be stopped or they were charged to do it I doubt they could afford it, so the present system is the best for the time being. When they cut back the hours a junior doctor could work (and I'm not arguing that they shouldn't have done so) they also reduced contact time which in turn has impacted on gaining knowledge of different areas of medicine. It's a bit Catch 22.

knitwitty
knitwitty
in reply to Espeegee

Sorry I meant that the private hospital should maybe pay something towards the training of the consultants, it is they who get the highly experienced doctors for nothing.

Increasingly there seem to be many consultants who work many shifts Mon-Friday in private hospitals but are never available in the NHS setting.

This person is who I saw at Spire. She overran the appointment before me so mine was cut short and I was still charged the full amount for the consultation.

Think I saw her again after that on the NHS at Salford and she passed me on to one of her colleagues. Might have been the guy you’re now down to see.

Her diagnosis: lack of’micronutrients’ - go and take some vitamins. His later diagnosis: CFS. Actual problem (discovered after badgering my GP and looking at my test results): Hashimotos.

I'm sorry that you had to wait so long for an appointment to an Endo. I live in the US and I can get an appointment within a day or two with no referral or whatever you said. Thyroid issues need to be taken seriously and it really sucks that you had to wait so long. Good luck to you!

Good luck with Endo. I am seeing one.in February. I have been waiting since May last year due to a cock up by my doctor

Good luck with you appointment Espeegee. I was referred last May but had to wait about 6 months, I've had two appointments so far and I do t have confidence in my endo at all so am going to go back in 8 weeks and see how that is and then go private if I have to. Is it NHS you're seeing? I'd love to hear how your visit goes.

Espeegee
Espeegee
in reply to Flossles

I’m unlikely to attend as the letter says I’ll be seeing one of his team which hangs out in the Diabetic Centre, not very hopeful is it.

Flossles
Flossles
in reply to Espeegee

Oh dear. Go anyway and see how it goes, You never know it might turn out well.

There is that option but it's nearly a 70 mile round trip. Here's his bio but of course I'm seeing one of his team -

Biography

Akheel Syed secured his primary medical qualification from St John's Medical College with undergraduate awards in Anatomy, Biochemistry, Microbiology, Pharmacology, Ophthalmology and Otorhinolaryngology, following which he undertook core medical training in England leading to the diploma of Membership of the Royal Colleges of Physicians of the United Kingdom. He undertook higher specialist training in Diabetes & Endocrinology and General (Internal) Medicine in the Northern Deanery that led to the award of dual Certificate of Completion of specialist Training. During the course of his training he accepted a research assignment at Newcastle University to study the genetic and molecular basis of glucocorticoid sensitivity in obesity and the metabolic syndrome; this work led to the award of Doctor of Philosophy.

No mention of thyroid there so he's not a specialist and hasn't undertaken any specific thyroid training it seems. I don't want to waste my time or theirs.

Hi can I ask what one of the tests you had from blue horizon? X

Espeegee
Espeegee
in reply to B12jab

Thyroid 11 I think it is. bluehorizonmedicals.co.uk/t...

B12jab
B12jab
in reply to Espeegee

Thanks so I had is that the finger prick test or the arm vein blood test?

Espeegee
Espeegee
in reply to B12jab

Well it's the finger prick but you prick and then squeeze until you fill the tiny container they send you. If you want a blood draw it's extra.

Espeegee, if I were you I would attend the appointment even if it is not who you wanted to see. I was diagnosed 55 years ago and I am still waiting to see an Endo! For you to be seen so soon is amazing. Diabetes and thyroid are have part of the endocrine system so I suspect the endo will be at least better able to help than the GP. Good luck x

Espeegee
Espeegee
in reply to Miffie

I have seen one already who exhibited not a whit of understanding and a female to boot. When she started telling me how she can put a few pounds on too without knowing why I realised she lacked any understanding. I will go but with little expectation of seeing someone knowledgeable as I will not see the Consultant it seems.

Be careful and make sure they listen. I saw someone privately in Salford who cost me a lot of money and told me I just needed to ‘take vitamins’. Eventually I got a NHS referral at Salford and after blood tests (including thyroid, but TSH and T4 only) was sent away with a diagnosis of chronic fatigue syndrome. It took a last ditch appointment with my GP - accompanied by my partner, and with a lot of Thyroid UK print outs - to get a more detailed set of bloods. Again, they came back as ‘normal’.

It was only when I asked for a copy and looked for myself that I saw I had considerable antibodies (flagged up on the results but missed/ignored by my doctor) and yes, I have Hashimotos.

Decades of symptoms plus documented B12 malabsorption and another autoimmune condition, so much money wasted on private consultations and in the end it was me who had to connect the dots.

Go with your gut feeling, present your symptoms and don’t accept a diagnosis if you know it’s wrong.

Oh, and don’t lose your parking token like I did!

Good luck.

Hi there, hope you don’t mind me asking a question. I was also diagnosed with CFS. I’ve been unwell for some years. I also always tested within range for thyroid function. I was recently told my thyroid was inflamed on an ultrasound. I did a blood test and it came back as high for thyroglobulin antibodies, about 770 normal range 0-115. No peroxidase antibodies. I was wondering what you have done for the Hashis? The antibody things is odd as I was told by an endo they were making me very ill and causing me issues, but this isn’t in the letter I received after the consultation which I find v odd. The opinion was what was paid for privately. Thyroid surgeon says doubts they are making me ill. Have you managed to get the antibodies down? I really feel for you. Who diagnosed your Hashis?

Thanks again Janey

Hello!

I wasn’t ever officially diagnosed until I talked my GP into doing a full thyroid blood test, and even then they said the results were fine. I wanted to see for myself and that was when I pointed out the antibody count. He then agreed it was autoimmune thyyoiditis.

They tried me on Levothyroxine (A very small dose) but I didn’t react well to it - my symptoms changed to hyper - so they took me back off. I now get a blood test every 6 months to monitor thyroid function but frustratingly they only check TSH. My symptoms have been getting worse lately so I’m considering paying for tests via Medicheck.

I’m gluten free as I have another autoimmune issue and I’m also dairy free. I’m doing loads of work to try and fix my gut as that’s key to dampening down inflammation and autoimmune activity but it’s really restrictive and very hard work :(

Hope this helps, but feel free to ask any more questions!

Sarah.

Thanks Sarah, yes it’s so weird as I’ve been told by my ultrasound hospital consultant that my thyroid is very inflamed and I have Thyroiditis. Then I came back with high antibodies. But, they are saying as it’s only high thyroglobulin antibodies and not any peroxidase antibodies it doesn’t mean anything. I’ve just had a test for TSH antibodies via Medichecks. Isn’t it awful that we have to pay for these! The latter was over £100, as I paid extra for professional blood draw.

I’m so sorry you aren’t feeling great. I know what you mean, my gut is a nightmare. I find meditation is great. Have you tried that? High dose vitamin C really helped me. I’m not sure why though.

It was thyroglobulin antibodies which prompted my GP to agree I had autoimmune thyroiditis, so it goes to show how little consistency there is! A test a year ago shortly after we'd moved up to Scotland also showed perioxidase antibodies.

I daren't think about how much I've had to spend on books, supplements, consultations and travel to deal with this - and it's still ongoing! I'm planning on getting the Medicheck tests to present to my GP as my thyroid's currently untreated and things are definitely getting worse. Mainly sore throat, grinding exhaustion, dizziness and a total inability to get and stay warm. It's miserable!

My symptoms go back decades and I worry about my little boy as apparently there's a possibility this can be hereditary. I don't know whether he should be gluten free, but don't want him having a needle stuck in him to check for coeliac - he's only 6 :( and I tested negative in 2017 (but have been gluten free for quite a while).

I really want to try meditation and should give it a go. I think vitamin C is good for the adrenals. I need to find a gentle one though as I've had gastritis for the past 2 years. It never ends!

Feel free to stay in touch. I've only just joined this site and don't generally comment online but I like knowing there are people out there who 'get it'. I just have to be careful I don't read too much on all this as I end up scaring myself!

I contacted the lady I hoped to see via her website, she was kind enough to reply and advise she sees very few patients at Salford but she says her colleagues there have taken over her work and they are “excellent” so who knows. I’ve bought and am reading Dr. Peatfield’s book so I can arm myself as well as possible.

Good luck! You might get someone really good. And I agree with an earlier comment - fill in the Thyroid UK symptom sheet. That’s what finally persuaded my GP to test for antibodies.

An update on my visit to Salford Royal. Sadly it was a fail 😢 Saw very pleasant young man, he started by ask8ng me why I was there, I was about to get my paperwork out and he said no, don’t do that yet just explain. So I did. At the end of which he said ... “You’re not hypothyroid”. Gosh I thought, this fellow's a magician, he can see right inside me! How else could he diagnose someone he’s never met before, just like that? We batted it back and forth for 40 minutes, him saying just because this and just because that didn’t mean I was hypothyroid. I won’t bore you with all the details because they’re pretty identical to everyone else’s who’s gone through this. He said he would test my blood, I asked him why as he’d already decided I wasn’t hypo, well he thought he should, I told him I didn’t think there wasn’t any point. I threw everything into the pot I could, even asked him what he specialised in 😈, he said he was an endocrinologist, I said the majority are diabetic specialists, he said yes he did do diabetes but Endo covered different things. Honestly he was very personable but tried to bluff it out, when I suggested using TSH level wasn’t an efficient way to test for hypo because it was what happened in the thyroid that was important he drew me a diagram showing how it was made in the pituitary and that was called down by the thyroid and became T4 and T3 😂 He said he would really have liked to have continued our discussion but he had another patient to see. I recommended he read Dr. Peatfield's book and those of a few other doctors who specialised in the thyroid. He’d never heard of Broda Barnes or using basal temperature to determine hypo.

So he decided he would take blood to test and I could come back in 4 months, his parting shot was that just because I wasn’t hypo now, I could be in 2 years time because quite honestly the longer you live the more likely it is to go wonky. I’ll just wait another 2 years then I might just have it.

Another door closes sigh but I was rather expecting that.

Just remembered he told me a heart rate of 40ish was normal in a resting state. When I mentioned I had a lot of ectopic beats and palps then said that that’s why I couldn’t have Levo as that would make my heart beat faster so it wouldn’t be good for me 🙄

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