Endocrinologist

[dizzy864]

Hi everyone,

I just thought I'd write about my recent experience. My gp refered me back in early June. She was very insistent that I see someone at my local hospital. ( Lincoln )

I finally got an appointment for the 7th January - a wait of almost seven months! I had read on this site about not all endo's actually being thyroid endo's.

Briefly, I was diagnosed hypo 26 years ago. I have been unwell for over five years. I am getting worse and worse. My gp has told me that she thinks I am resistent to T4. I had also discussed with her the possibility of me having auto immune and in particular hashi's. Just before Christmas, I telephoned the endo department to try and ensure that I saw an endo who could actually help me with my thyroid problems. I was given the telephone numbers of two departmental secretaries. After Christmas, I finally managed to make contact with one of them. I tried to explain why I needed to see a thyroid specialist and not a diabetes specialist. I was told that I could not choose who I saw, and that I had already been allocated to a specialist. Reluctantly, she told me that it was the head of department. I had previously googled the department. The consultant list was last updated 3rd january 2014 - so useless. It stated that, Dr Tarik, the head was a diabetes specialist!!! I told the secretary that he is a diabetes specialist and I really need to see a thyroid specialist. Her reply was, "He also sees thyroid patients."

I asked if there was anyone in the team that is a thyroid specialist. She refused to discuss this.

Just when I thought things could not get any worse, they did. On 4th January, I was diagnosed with shingles. My cat had jumped on my back several days earlier and I thought the scratches had infected, but it was actually the shingles rash. I phoned the hospital five times throughout Monday the 6th for advice on whether to attend or not. I could not get nearer than 10th in the queue and at times 21st in queue.

In spite of feeling really ill and incredably sore I attended the appointment. The hospital staff were not happy but Dr Tarik agreed to see me. But I was told he would not shake hands with me. That was really the least of my concerns!!

In his favour, he was very polite, listened to what I had to say and told me that he always treats on symptoms not bloods. He never told me to stop T3 or even suggest reducing it, even though I admitted to self medicating a small increase to T3. My T3 was above range. To be fair most of the blood tests that I had done on 30th were above or below range as the shingles virus affected them. He was initially, fairly persistent in his belief that my symptoms were all down to something other than hypo. The problem was he could not come up with anything else that fitted!.

When I asked Dr Tarik about auto immune, he told me he could not discuss that as it is outside his area. I told him I would like to try T3 only. He told me that it is not the usual treatment for hypo. I told him I was aware of that. He then said he could not discuss that either as it's also outside his area.

As we stood up to leave, he said we could test my adrenals again. Unprompted, he conceded that I was very unlikely to have a problem as there was not a problem when they were tested last year. He added that he will write to my gp. I can't do the adrenal test whilst I still have the shingles virus.

I have been too ill to return to my gp. I am hoping that Dr Tarik has advised my gp who she can refer me to and that it won't take long. But really, I believe that is naive and that in reality I am back to square one after a seven month wait.

My big question is how do I find a thyroid specialist to see??

I contacted thyroid UK months ago. They sent me a very short list and no one within 200 miles of my home on it. I also posted the question on this site and received no replies. Does that really mean that this country has no thyroid specialists?

Can someone please tell me what I do now?? Whilst not wishing to spend yet more money on trying to sort out my health, I am willing to do so, if only I could find someone qualified.

The only thing I come up with is to self medicate a change from T3/T4 to T3 only.

When I increased T4 on instructions from my gp, I got very hyper. I feel less tired since my 5mcg increase of T3 but I still have lots of hypo symptoms. So T3 only may be my way forward. I don't understand how one actually makes the change as T3 and T4 have such vastly differing half lives. My gp did tell me she can't help me with this, it has to come from a consultant. So, it's looking very likely that I will have to go it alone.

My daughter lives two miles from Heathrow airport. Does anyone know of a thyroid specialist in that area? I could stay with my daughter for a few days. Please private message me.

I feel better for venting!! I only wish it would last!!

[DippyDame]

Ah!

Do you have any recent labs that you can post....difficult for members to comment without them.

TSH, FT4,FT3, folate, ferritin, vit D and vit B12 are advised as essential to support conversion/thyroid function

Many of us test privately ...

thyroiduk.org.uk/tuk/testin...

Have you had antibodies tested for Hashi's

You may have a problem converting the storage hormone T4 to the active hormone T3 which is required by trillions of cells in the body in an adequate and constant supply.

The half lives T3 and T4 are different but not really an obstacle once you come to study and understand how they work...

Her suggestion that you may be "resistant to T4" is vague, she may have been thinking along these lines...

yourhormones.info/endocrine...

As someone who eventually had to privately test, self diagnose and self treat my own form of Thyroid Hormone Resistance I understand your anxiety. I've had to spend a great deal of time reading and learning. This TUK forum has been an outstanding guide and support.

It is now thought that RTH may also be caused by as yet undiscovered genetic variants and there are other theories that endocrine disrupting chemicals may play a part.

Not an easy subject and one that medics are reluctant to consider....

Good luck with finding a well informed endo

[greygoose]

That endo sounds like a very nice, intelligent man. At least he admitted his limitations, instead of pretending he knew it all and messing you up.

My gp has told me that she thinks I am resistent to T4. I had also discussed with her the possibility of me having auto immune and in particular Hashi's.

What, exactly, does she mean by 'resistant to T4'? And, why does she think that? Do you have any lab test results you can post - with ranges? That will help us to understand what's going on?

Have you had your TPO/Tg antibodies tested? That should tell you if you have Hashi's. Or an ultrasound of your thyroid?

I contacted thyroid UK months ago. They sent me a very short list and no one within 200 miles of my home on it. I also posted the question on this site and received no replies. Does that really mean that this country has no thyroid specialists?

It probably does, yes. There was Dr Skinner, but he died. There was Dr Peatfield, but he retired. I don't think there's anyone left.

My daughter lives two miles from Heathrow airport. Does anyone know of a thyroid specialist in that area?

Probably not. But, from there you could hop on a plane to Paris, because there's one there. Or Brussels. But, it would be extremely expensive. If you could even get an appointment with one of them.

So T3 only may be my way forward. I don't understand how one actually makes the change as T3 and T4 have such vastly differing half lives.

I don't see the half-life makes much difference. You can increase the T3 by 1/4 tablet, and decrease the levo by 25 mcg, every six weeks. It would have to be done slowly, however you did it. Although, if you are a very bad converter, you could possibly do it faster. But, posting some labs and telling us how much of each you're taking at the moment, would help.

PS: I'm on T3 only myself.

[SlowDragon Administrator]

Looking through previous posts I couldn't see any vitamin results and last FT3 test 9 months ago?

We would ALWAYS recommend getting FULL Thyroid and vitamin testing privately BEFORE seeing any endocrinologist...especially if seeing one privately

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

How much Levothyroxine are you currently taking

Do you always get same brand of Levothyroxine?

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last 1/3rd of dose 8-12 hours prior to test, even if this means adjusting time and splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

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 )

monitormyhealth.org.uk/thyr...

As you have Hashimoto's are you on strictly gluten free diet?

Or lactose free diet?

These are frequently helpful or essential

[dizzy864 in reply to SlowDragon]

Hi , Thanks for your reply.

Firstlly, my thyroid bloods are always done following the regime advised on this site.

I contacted my gp prior to the blood draw and asked that my vitamins and minerals be checked at the same time as my thyroid draw. This was agreed. When I had the blood draw I checked with the nurse that the message had got onto my file and that my vitamins and minerals were to be checked. When I got the results, only vitamin D had been checked.

93 ( > 70 ). I was very surprised that this had only gone up from 86 in May. I had increased from 1000 iu vit D3 to 2000 D3 +K2 after the last test.

Lots of other things were tested including T3, T4 and TSH. I did not publish the results because I am not sure any of them are valid. Eight of the tests were either above range or below range. I did not know that when I had blood draw that I had shingles. A viral infection which affects blood tests!! I don't know why my vitamins were not tested as agreed. I have been too ill to discuss any of this with my gp.

I have not been diagnosed with hashi's. Some of the symptoms seem to fit. My gp told me she was not allowed to discuss this with me, I had to see a consultant. I was tested for celiac a couple of years ago - negative. I did go gluten and dairy free for a couple of months - it made absolutely no difference to any of my health issues.

My serum thyroid peroxidase anti body concentration was 15 ( < 34 ) in April 2018. My gp refused to test again.

I asked the consultant for a scan of my thyroid - he refused.

I was really ill for four years before being diagnosed hypo in 1996. My gp was convinced it was premature menopause!!

I was never really well on T4 alone. I think it was in 2003 that I was prescribed 1 x 20 mcg liothyronine to be taken on rising. This made an amazing difference. I had my life back but unfortunately only for five or six hours!! After lunch I was back to where I'd been before. I think in 2009, I saw a newly qualified consultant at Hull. He told me that he had read a great deal about T3 as a treatment for hypo. His research lead him to believe that it works for a small number of people may be 30 to 40% of hypo patients. It was wonderful, a consultant was actually agreeing with everything I said!!!

He prescribed two extra 20 mcg tablets of lio a day. I was told if I have any problems stop the increase immediately, otherwise return for a follow up appointment in three months. The difference was absolutely staggering. I was well at last. I felt twenty years younger. I had a blood test just prior to the follow up appointment. I saw the head of department. He was extremely rude. He told me to stop ALL lio immediately as I should never have been given it.

My husband and I walked out. I never knew my actual results only that TSH was suppressed.

I refused to reduce or stop lio. I had years of arguing with my gp that I was over medicated. But I was well. I lost two and half stone that I'd failed to lose. I enjoyed life. it lasted almost five years before I started to get all my old hypo symptoms back. I've not been well since.

I believe my hypo was kicked off by my listening to my gp and reducing my meds. A small reduction made me really ill and I've never recovered.

My gp went back over my records from when I was first diagnosed hypo. She said it's very clear that T3 has a big affect on me and that when I've been given it or had it increased I'm very much better. I could ( oh did !) tell her that.

As nothing else has worked, I thought T3 only might. Adding T4 just makes me hyper.

[dizzy864 in reply to SlowDragon]

Hi, I forgot to say I'm currently on 125mcg Levo and 65mcg lio.

I had been on 100mcg levo and 60mcg lio since 2009. My gp increased levo to 125. I was a bit better but still not well. She then increased it again to 150mcg. I became very hyper - sweating profusely all the time. I also felt very hyper. We agreed to put it back to 125. I asked her to try increasing lio but she refused. I put it up to 65mcg myself. Again, I am better but still have loads of hypo symptoms. I have had absolutely no hair under my arms for more than five years. My eyebrows have distinct splits in them. The rest of my body hair is very thin.

I can't think of anything else to try other than T3 only

[SlowDragon Administrator in reply to dizzy864]

Suggest you get full Thyroid and vitamin testing privately first

Medichecks is the cheapest

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

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

[dizzy864 in reply to SlowDragon]

Hi,

I want to speak with my GP first. I can't have any blood work done while I still have shingles. I tried to make an appointment today expecting it it to be in 1 to 2 weeks. The earliest appointment was 13th February!! Surgery is starting a new system next Wednesday. I have to email surgery with request for appointment giving reason. I then get a reply offering appointment or not!

Is this really progress? Does this system work elsewhere?

[SlowDragon Administrator in reply to dizzy864]

Vast majority of complex patients get FULL Thyroid and vitamin testing privately

Medichecks is cheapest option

Frequently your promised full testing by NHS ...,and NHS lab doesn't do full testing ....after waiting weeks ...stopping vitamin B complex etc

[dizzy864 in reply to SlowDragon]

I've just found another page of results - left in my printer when I copied them for my consultant - I blame it on me feeling so ill with shingles

.

These are the vitamin results I have:

30/12/19

Serum Vit B12 621 ( 197.0 - 771.0 )

Serum Folate 11.9 ( 2.0 - 18.7 )

Serum Ferritin 39.7 ( 20.0 - 260.0 )

Serum total Vit D 93 ( > 75 )

My previous results:

May 2019

Serum Vit B12 747 ( 197.0 - 771.0 )

Serum Folate 18.7 ( 2.0 - 18.7 )

Serum Ferritin 43.9 ( 20.0 - 260.0 )

Serum Vit D 86 ( > 75 )

I really do not understand these results. After getting the May results, I doubled Vit D supplement from 1000 iu vit D3 to 2000 iu Vit D3 + K2 daily.

I stayed on the same B complex tablet daily, I've greatly increased my iron tablets. I was having a 5mcg spray daily. I managed to increase this to 20mcg gentle iron every alternate day. I expected my vitamin levels to really have gone up.

It's possible that my shingles virus affected these results. Or is it possible that I'm also not absorbing the vitamins as I should? To be honest I am very surprised at the amount of gentle iron I have been able to take. For many years even the smallest amount of iron has really upset my tummy, then suddenly earlier this year I found I can take a gentle iron tablet with virtually no affect. I'm now wondering if this is actually a bad thing.

[Batty1 in reply to dizzy864]

Shingles could take months to go away and are you taking medication for them?

I’m curious what your recent labs are even with shingles (I’m sure you weren’t aware you had them) prior to thyroid test.

[dizzy864 in reply to Batty1]

Hi,

I read with some people shingles never goes away!! Once you've had the pain for 90 days they give you a name for the pain. It's only been 25 days with me so I'm not there quite yet. But I am still in a lot of pain. I haven't worn a bra in three weeks - just the thought is unbearable given the pain I have in my breast. I am feeling less ill but that just means that i don't want to lay in bed any more but I still need to as I can't sit in a chair without a lot of pain. I'm also going stir crazy. The only time I've been out of the house since my diagnoses on the 4th was to see the endo.

I can't believe that such a miserable, painful long lasting illness exists or in particular that there is a vaccine against it that I did not know about. The vaccine has been available since 1995. It's free on the NHS to anyone over 50, 60 or 70 apparently depending on where you live. My husband had it last week!!

I was given 7 days of anti virals and some rather weak pain killers. The anti virals gave me some really unpleasant side affects and were useless to me as I sort medical help much too late. Treatment with anti virals has to be started with in 96 hours of the start of the disease to be affective. I was over a week after that dead line. I had no idea that the six days of tummy ache was the start of shingles!! Nine days later when I'd finished the anti virals and the completely useless pain killers another gp was prepared to give me much stronger pain killers. These have been some help with sleeping at night but they only last me three hours and I cant take more until after 4 hours and they take a n hour to work!!

I can't stress enough to all you people over 50, 60 or 70 see your gp and have the vaccination. A sore arm is such a small price to pay for avoiding such a terrible illness. All thyroid sufferers have an increased risk of getting shingles.

I have now published my thyroid and vitamin results although I'm really not sure how valid they are. I got a tummy ache on Christmas eve, vomitted in the toilet of my local pub whilst celebrating Christmas with my family - It really was shingles and not too much alcohol. By the 30th, when I had the blood test my tummy ache had gone. On the 1st I got the first pain in my back.

[mandyjane]

There are lots of thyroid specialists on here dizzy. We are not qualified doctors but most of us know way more than they ever will. Problem is we cant prescribe so you have to access your own hormones. You can post and get pms re where to get them. I have just pmed you with the name of a doctor I was given as being helpful but I have not seen him. I am currently studying the medical exams syllabus and there seems to be no mention of the thyroid gland in any of it, not even in the endocrine part of it.

[dizzy864]

Thanks for your reply. It seems the thyroid is a big joke to everyone but us sufferers.

[dizzy864]

I ve been vegetarian 45 years so no I don’t eat liver. I do the best I can with supplements. I am concerned that levels are going down when I m definitely taking more.

[SlowDragon Administrator in reply to dizzy864]

Have you ever had high thyroid antibodies at any previous blood test ?

If ever had above range antibodies, even if now within range, the cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's

Your TPO antibodies are currently negative, but you need TG antibodies tested

NHS refuses to test TG antibodies if TPO antibodies are negative. We have many people on here who only have high TG antibodies and struggle to get Hashimoto's diagnosed

20% of Hashimoto's patients never have raised antibodies

Have you ever had ultrasound scan of thyroid?

healthunlocked.com/thyroidu...

Have you ever tried strictly gluten free diet?

Helps or is essential for many people

It's very difficult to maintain optimal iron and B12 levels as vegetarian with thyroid disease

Poor gut function means poor nutrient absorption

So you will need to supplement continuously to maintain optimal vitamin levels

All plant based iron is non- heme and much harder to absorb

Many of us with Hashimoto's need high maintenance dose of vitamin D

Your vitamin D has gone up on 2000iu

[dizzy864 in reply to SlowDragon]

Hi,

I had serum thyroid peroxidase anti body tested end of March 2018.

15 ( <34 ) I have asked my gp to retest this. She refuses. I also, asked my gp for a scan of my thyroid. Again, she refuses. She believes these are tests that a thyroid specialist should order.

Yes, My vit D had increased slightly but it was down from the 129 that I had it up to in April 2018.

I did go completely gluten free and dairy free for two months a couple of years ago. It made absolutely no difference to any of my many symptoms. I was tested for Coeliac disease in May 2019 - <1 ( Negative < 7 )

The only anomaly I've had is in April 2018 my red blood count was 5.02 ( 3.83 - 4.98 )

This was considered unimportant at the time.

My thyroid was tested on 30th December, but as I said I had shingles at that time and it did affect a lot of the blood results causing them to be above or below the range.

But for what they 're worth:-

free T4 16.5 (11.0 - 23.0 )

free T3 8.49 ( 3.1 - 6.8 )

TSH suppressed

I self medicated an increase in t3 from 20 mcg x 3 a day to 20mcg x2 a day plus 25mcg x 1 a day. I'm also on 125mcg levo. At the time I was sleeping all the time, too tired to do anything when awake. Not functioning at all. My gp had put me up to 150mcg levo but this made me really hyper - particularly sweating all the time. It did help a lot with other things though. We agreed that I should go back to 125mcg. She refused my request to increase lio even though she had previously said I could if increasing levo did not work.

The increased lio has helped a lot. I am sleeping a lot less and generally functioning a lot better.

My main concern is with my bone density. When it was tested six months ago, it had fallen more than it should have. Since then I have been completely inactive. I have been using an exercise bike for over 25 years. I like to do at least an hour ( sometimes up to 2 ) six days a week. Over the past six years this has fallen back a lot. less time, less days, lower and lower resistance. Six months ago, I admitted deteat. I no longer use it at all. I do not have any strength. I just could no longer push the peddals on even the lowest resistance. I could not manage even ten minutes. I have read that this is due to a desperate shortage of T3, which certainly fits with every thing else.

It's not just about exercise. I can not stand any more. When I stand to peel vege etc, I have to collapse in a chair and recover for 20 minutes, before continuing. Preparing dinner takes me all afternoon!!!

My big question is, if I have hashi's , which seem extremely likely, what can I do about improving my life and that of my family? My husband and I don't have much of a life anymore. Every time we book a holiday, we wonder whether we're even going to make it. If we do, we worry about what I'm going to go down with while we're there and how much of a problem it will be. It's happened again!! We're due to fly to Orlando on the 19th February. I have been so ill and in so much pain with shingles, there is no way at the moment I can make the flight. Shingles is another thing that strikes people with impaired immune system!! I'm not getting any better on a day to day basis. I'm still in a lot of pain and taking really strong pain killers to enable me to get any sleep. Every time we arrange to meet family or friends, I am ill. Either we cancel or if we go, I get there and wish we'd cancelled!!

How does any one live with hashi's? Will my going over to T3 only reasonably be expected to help with my symptoms? Does anyone have any advice living with hashi's and coping with it's effects?

I can't even book an appointment with my gp at the moment. When I finally get to see her, I don't expect any real help. She just hides behind it has to come from a consultant.

[SlowDragon Administrator in reply to dizzy864]

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you did the test?

Your results suggest you are over medication

FT3 is some way above the top of range

It can be extremely difficult to lower dose

Can see you said gluten free diet made no difference

have you also tried strictly dairy free diet

[dizzy864 in reply to SlowDragon]

Yes, I went strictly gluten and dairy free for a couple of months. It made absolutely no difference. I always do bloods in accordance with recommendations on this site. I am aware that T3 is high and shows me over medicated. After my T3 was increased from 20mcg to 60 a day, I was told I was over medicated. I was always told it was because my TSH was suppressed. A few months ago, when my GP told me she had looked back at my results over the past 20 years, she told me that my T3' was 8.7 at that time. I can honestly say, I felt really well then. I lost the 3 stone I' d gained since being hypo. I had lots of energy and really enjoyed life again. It took over 4 years and numerous thyroid tests for me to be diagnosed even though all the many doctors I saw said I had classic hypo presentation. I was finally given levo by a gynecologist who decided to treat on symptoms instead of bloods. For some reason I need to have T3 above normal.

[dizzy864]

My records are not available on line at present. I did look into accessing them a couple of years ago but I had to fill in a hugely long form and get it signed by a non family member who had known me for ten years - worse than a passport application!! I know that I really ought to try again.

Changing surgeries is not an option for me, I wish it was. I live in a village. Our only surgery is shared with the next village eight miles away. There are no other surgeries that will accept patients from the village I live in. I would like to move house. I had the house on the market a couple of years ago but had no luck at all with selling.