Will the NHS now listen to me on my latest Thyroid results, advice greatly appreciated.

[Peanut31]

Hi

As many of you know i've posted here previously, to cut a very long story short (detailed in previous posts).

I paid private to see an Endocrinologist after going to my GP with thyroid symptoms and my TSH being 6.8 and Thyroid antibodies of 58, and low vitamins from the GP testings.

I didn't realise symptoms were thyroid related until going to an acupuncturist to try and solve my really bad neck stiffness, and they suggested I need to get my thyroid tested.

The endocrinologist did my vitamins levels and they were bad, I also tested positive for Epstein Bar Virus and tested positive to antibodies.

Endo gave me some anti viral tablets to help Epstein Barr and told me to take some vitamins, prescribed me high dose of vitamin D and gave me liquid iron.

He also prescribed me anti depressants, but I refused to take them. Anyway after a few consultations it became clear that he was only concerned about my vitamin levels, so I suggested that I have private bloods for Thyroid and a scan.

Scan confirmed Hashimoto's, but this time I had joined this form, and was receiving far more advice from you guys than from him.

Private blood results (September 2017)

Thyroid stimulating hormone 4.34 (0.27-4.2)

free thyroxine 14.1 (12.0-22.0)

total thyroxine (t4) 79 (59-154)

free t3 4.1 (3.1-6.8)

reverse t3 15 (10-24)

reverse t3 ratio 17.79 (15.0-75.00)

thyroglobulin antibody 47.0 (0-115)

thyroid peroxidase antibodies 37.6 (0-34)

active b12 84 (25.1-165.00)

folate (serum) >20.0 >2.9

25 OH vitamin D 165 (50-200)

inflammation marker CRP <0.3 (0.0-5.0)

ferritin 54 (13-150)

thyroid function intact (whole molecule PTH 2.0 (1.6-6.9)

calcium 2.32 (2.20-2.60)

corrected calcium 2.20 (2.20-2.60)

Albumin 52 (34-50)

Endo didn't even look at the results, despite me emailing then to him and taking a copy with me.

I went gluten free, then later dairy free, I made sure I took selenium, vitamin, C, B12, Iron. I also started to work with a nutritionist, a stool sample confirmed several bacterial infections and I was put on antibiotics, I also showed an intolerance to dairy and gluten and several other foods, so I have been working with her.

The Endocrinologist did confirm I had Hashimoto's, but then said there was nothing further he could do to help, no medication would help.

When I question this, by saying "so I have to feel like this for the rest of my life" he then said that he wanted me to have a second opinion. The second opinion person was given my files and then said that the previous endocrinologist had been thorough, but I was welcome to see her. Not wanting to waste anymore money I declined.

I did start to feel better, my neck stiffness went, and my tummy was a lot better after working with nutritionist, then started to feel unwell again

I also made to the decision to self medicate, on Thyroid S, I only started this for a couple of days, but felt dizzy and absolutely awful, could hardly get out of bed, and walk, so stopped it and ordered a different make (waiting for this to arrive)

This is when I decided to go to my GP (different one as moved areas), blood were taken on Wednesday, 5 days after I stopped the Thyroid S, and they were taken at 8.30am

Here are the results I received today:

Serum Free triiodothyronine level 4.12 (3.1-6.8

Serum free T4 level 10.2 (11.0-23.0)

Serum TSH level 12.2 (0.27-4.5)

serum thyroid peroxidase antibody 160 (<34)

As you can see they have got worse, despite me going gluten free, etc.

My vitamin levels are high now, as the endocrinologist told me to keep taking vitamin D and B12.

Serum vitamin D 175 (>75 level should be at normally)

B12 1,091 (197-771)

ferritin level 72 (20-130)

GP phoned me to say stop taking the vitamin D and B12 asap and at the time I was waiting for the Thyroid results, told her I felt awful.

Then received a text to phone surgery, receptionist told me GP wanted a telephone appointment to discuss Thyroid results (this was before I had seen them) the only earliest appoint was this Thursday.

When I saw the results I went to the GP and asked for a sooner appointment face to face with GP told nothing, other than a sit and wait appointment, I am going to go but, it depends on what GP is working, as before Christmas I went to see a GP and asked to be put on Thyroid medication, she told me it was all in my head, anxiety and I had been misinformed about Hashimoto's, and how did I expect her to prescribe me anything when the Endocrinologist wouldn't.

This is why it put me off going back to the GP. I am frightened that they will say repeat bloods again in 6 months time, as when will they finally help me.

I feel so ill and its really getting me down, I am so cross as well as the endo has done me no favours.

Any advice please.

Best Wishes

Peanut31

[humanbean]

In your shoes I would want an explanation of these results from your endocrinologist :

corrected calcium 2.20 (2.20-2.60)

25 OH vitamin D 165 (50-200)

Taking Vitamin D supplements normally raises the level of calcium absorbed by the body. Your vitamin D is high and yet your calcium level is bottom of the range.

Have you been taking magnesium and vitamin K2? These are required for the body to absorb calcium into the bones and teeth. You don't want calcium to end up lining your arteries or getting deposited into various organs.

But, if you were taking magnesium and vitamin K2 with your vitamin D I would expect your calcium levels to be higher than they are.

Have you investigated hypoparathyroidism?

parathyroid.com/hypoparathy...

en.wikipedia.org/wiki/Hypop...

I noticed that you've had PTH measured :

thyroid function intact (whole molecule PTH 2.0 (1.6-6.9)

I'm assuming that you haven't had thyroid surgery or thyroid removal or any surgery on your neck that could have affected your parathyroid glands?

Your vitamin D, calcium levels and PTH levels do not tell a coherent story to be honest, so I can't imagine what is going wrong.

With high vitamin D I would expect your calcium levels to be quite high in range. With low calcium levels I would expect your PTH to be very low. It isn't great, but it is still within range.

[Peanut31 in reply to humanbean]

This Endocrinologist was on the list provided here, I know it’s not a recommendation, but I did contact thyroid uk and explained my experience and they have removed him from the list (hopefully) as zero tolerance.

I’ve been taking magnesium tablet at night but not k2?.

I’ve not had any thyroid surgery at all or been on any medication.

The blood test I had taken on Wednesday also included some other results, as I’ve just turned 40 and due a health check the nurse said we might as well do the health check bloods in one go,

Anyway it’s flagged up eGFR 86 (90.0-200.0) I’ve looked that up and it relates to kidney function. I’ve never drink alcohol or smoked. It says borderline and no further action.

Another one: serum alanine aminotransferase level 34(<33.0).

I don’t know what’s going on, and I can’t get an appointment with the my GP other than a telephone call next Thursday.

The receptionist suggested a sit and wait one Monday so will have to do that, do you think I should find another Endocrinologist?.

I don’t want to go back to the previous one as I was paying private.

Best wishes

Peanut31

[Peanut31 in reply to Peanut31]

Sorry humanbean

I’ve just looked on my window sill.

I was taking vitamin K2 200ug from Nu U, it gave me awful muscle cramps, so took it every other day still awful, so stopped it a while ago, months ago.

Best wishes

Peanut31

[SeasideSusie Remembering in reply to Peanut31]

Did you take your K2 with the fattiest meal of the day? It is a fat soluble vitamin so needs some fat to be absorbed. You might find a better quality K2-mk7 supplement may not give you side effects. Also, you only need 100mcg for up to 10,000iu D3.

Nu U is in tablet form and has K2-mk7 plus the following ingredients:

Bulking Agents (Microcrystalline Cellulose, Dicalcium Phosphate), Vitamin K2 (MK7), Anti-Caking Agents (Magnesium Stearate, Silicon Dioxide).

There is no added fat to aid absorption.

Look at Healthy Origins which is a Softgel and contains, in addition to K2-mk7, olive oil to aid absorption :

Organic Extra Virgin Olive Oil, Vegetarian Softgel (Non-GMO Corn Starch, Glycerin, Carrageenan, Water), Beeswax, Non-GMO Sunflower Lecithin.

You tend to get what you pay for with supplements.

[Peanut31 in reply to SeasideSusie]

I took it during my evening meal, biggest meal, then I would develop really bad muscle cramps and my toes and feet cracking when I walked.

Wonder what was going on.

When I stopped taking it, cramps stopped etc.

I’ll look at the supplier you have suggested.

Thanks SeasideSusie

[SeasideSusie Remembering in reply to Peanut31]

If you want to try the Healthy Origins brand, it is a US brand and not many places in the UK sell it but this is best value

bigvits.co.uk/product.php?p...

It's the brand I use and if my main meal doesn't contain much fat, I take it with a full fat yogurt.

[Peanut31 in reply to SeasideSusie]

Hi seasideSusie

Yes I’ve just looked it up and saw this.

I’m of the opinion if it helps then I’ll pay the extra charges from USA.

Are all those ok to take with thyroid medication? Perhaps 4 hours away from medication

I’m not on anything yet, but I’m hoping to be on something soon after my results I got today.

I can’t carry on like this.

My neck pain is terrible, and getting worse.

Best Wishes

Peanut31

[SeasideSusie Remembering in reply to Peanut31]

I take my K2-mk7 with either lunch or evening meal and I take my thyroid meds during the early hours of the morning, any time between about 3am and 7am. If I didn't I would take it with my D3 four hours away from thyroid meds.

You don't need to buy it from the US, BigVits is a UK company specialising in selling US brands.

[okaykay in reply to Peanut31]

Hi Peanut31,

I have never posted in here, but I read and learn tons. I have Hashimoto thyroiditis with nodules My thyroid peroxidase antibodies were greater than 1300 last June. I felt beyond bad, but pushed through by the grace of God only. I take Levothyroxine and supplements and am gluten, dairy and soy free. I have had Epstein Barr for years and was just recently diagnosed with active EBV labs. Epstein-Barr causes my neck to hurt so bad that its excruciating to turn my head. Besides the fatigue the neck pain is the worst part of active EBV. I hope you get feeling better soon! Take care of you!

Sincerely,

okaykay

[Peanut31 in reply to okaykay]

Hi okaykay

Yes like you this website has given me more information than my private Endocrinologist.

I too tested positive for Epstein Barr virus and I was given anti virus tablets from Endocrinologist, my neck pain was terrible, endocrinology said that was because of the Epstein Barr virus.

Anyway was taking the medication over a month as per his advice, but interestingly the neck stiffness didn’t disappear, which I questioned him about.

He had no answer. I’m gluten free since September 17 and dairy free since over a month ago, gave up fizzy drink as well just before Christmas.

Let’s hope the GP will now treat me based on my recent results, as my private Endocrinologist was useless despite confirmation Hashimoto’s.

Best wishes

Peanut31

[humanbean in reply to Peanut31]

it’s flagged up eGFR 86 (90.0-200.0)

serum alanine aminotransferase level 34(<33.0)

If you've had other tests related to kidney function and they are all okay, then having an eGFR slightly below range is probably not a big issue (I don't think so anyway - remember I'm not a doctor.) Doctors might be interested if/when your eGFR drops below 60 and/or other kidney function measures start to show problems. For more info :

labtestsonline.org.uk/tests...

Regarding the alanine aminotransferase, this link may be helpful, but I'm out of my comfort zone with this test and can't make any comments on the significance (if any). :

labtestsonline.org.uk/tests...

Look through SeasideSusie 's posts for info on vitamin K2. There are two different kinds of vitamin K2 and supplementing one kind is better than the other (but I can never remember the details).

[Peanut31 in reply to humanbean]

Thank you so much, humanbean.

Best wishes

Peanut31

[Kalicocat]

Being low on thyroid hormones can cause fat to accumulate in the liver and that may be why your ALT is raised. Everything should normalize once you are on meds.

[Peanut31 in reply to Kalicocat]

Thanks Kailcocat

Best wishes

Peanut31

[Hidden]

Do you know what? I am totally fed up (would prefer to use stronger language) with the medical profession in the UK although I am beginning to realise that it really does not matter what country you live in and whether you pay or not for your treatment, we are treated abominably and in my case even my family who I know love me, constantly let me down and do not support me. I thought I had cracked my thyroid problems after ten years of being either high as a kite or so low I would either lie in bed and not speak or eat or alternatively would run away either on foot or in the car - usually to my poor mum because somehow you always want your mum when things go wrong - once I got as far as Birmingham from Horsham in west sussex and I did go back once it dawned on me that I had no money no phone no clothes etc etc. I got a warning from the police about stealing my husband's car and treated like an imbecile by my family 🙄. Of course it wasn't their fault - I was acting really strangely. However having had three years of being "normal" on NDT and finally being able to have the "bipolar" diagnosis removed from my medical records as my psychiatrist can no longer deny I have been completely well for three years and I owned up and told him I had never taken the dose of mood stabiliser tablets he had prescribed - I did take the minimum because even I was scared he might be right!! 😕 now I have a problem keeping my medication in my system because of a yet to be diagnosed bowel problem and does my family (particularly my daughter who I have supported completely through anorexia after her father left when she was 13 because he could not cope with her older brother who has Asperger's her - a diagnosis her father has never accepted even though Stuart is now 38!!). I bought her a a house which admittedly she pays me rent for but obviously it will eventually be hers, I look after her there children twice a week to enable her to earn a living, accept it's because of me not being able to contain my medication because I keep visiting the toilet every time I eat that for this reason I am having trouble keeping a high mood at bay all the time - I really am doing my best. I am taking immodium to try and stop the toilet visits but yesterday even two tablets did not work as well as it could ☹️. What I'm trying to say is that nobody seems to accept it when you have a problem with your thyroid - not the medical profession and not even those who are supposed to love you - if you are getting in the way of them enjoying their lives. I am very sorry for the rant but so disappointed 😥

[Peanut31 in reply to Hidden]

Hi JanWeaver160854,

I’m sorry to hear that you have had a bad time.

I completely agree about the medical profession, even with the thyroid figures they still

Think it’s all in your head.

I’m lucky my family, especially my husband has been so supportive of me.

We are all frustrated about the fact that the private Endocrinologist Just said “sorry nothing more I can do”.

I’m tempted to get in touch with him and tell him how ill i feel and show him my latest figures, but, I don’t want him to get in touch my with GP and say that the patient does not need medication still.

I’m really hoping when I see my GP, that they will prescribe Levothyroxine.

I know people don’t get on with it, but I’ve got another make of NDT hopefully arriving soon, so could switch to that if Levothyroxine doesn’t agree.

Best wishes

Peanut31

[Hidden in reply to Peanut31]

Good luck with thyroxine but please bear in mind if you suddenly start to getting migraines it could be the thyroxine. I had ten years of migraines that started with the first course of thyroxine and ended on the day I took the last tablet.

[Peanut31 in reply to Hidden]

Thanks JanWeaver160854.

Best wishes

Peanut31

[Mandy2007 in reply to Hidden]

Hi guys, I was reading with interest and can relate to everything that has been said. Jan after 10 years on Thyroxine did you just stop completely or change to an alternative? And if so, what are you on now, and is it better? Thanks Mandy

[Hidden in reply to Mandy2007]

I joined a group on Facebook and found out about natural dessicated thyroid (NDT) and discovered people all over the world suffering like me. I went back to my endocrinologist and asked if he would be willing to prescribe NDT for me and he agreed but it is all private because the NHS don't recognise this medication. Luckily I can afford the £90 every three months and the £175 consultation fee once a year. My endocrinologist is Dr KS <redacted full name> who is based at the Chelsea and Westminster hospital

[ Edited by admin:

26. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.

healthunlocked.com/thyroidu... ]

[waveylines]

Ndt is listed on the nhs but on a named patient basis. That means a doctor has to agree to take responsibility for your medication & its treatment. It took me two years after being on a ndt and stable to convince my GP surgery to let me have it on the NHS. Only on the proviso an endo will advise. Six years since that happened. So do persist. Both your local boots and lloyds can order in NDT and do.

The battle to get treatment for hypothyroidism is horrendous. And over the last few years has got worse. All heightened by the fact that no GP has time to breath let alone engage brain cells to consider other diagnosi. They are so reliant on the pathways on their computers and bound by tight requirments before they can refer on that any free thinking has been squashed!

its no wonder sites like healthunlock are so active/vibrant.....as we all seek to find our own solutions to chronic health problems. Lol....

[Peanut31]

Just looked and if my GP prescribes Levothyroxine it will have to be Teva, as I’m lactose intolerant.

Anyone got experience on this one?.

Best wishes

Peanut31

[okaykay in reply to Peanut31]

My Levothyroxine is made by Mylan. The Levo made by Teva is not gluten free. Name brand synthroid, and Levo made by Mylan and Lannet pharmaceuticals are all gluten free, as is Armour thyroid. Good luck! Prayers for you Peanut31

[Hidden in reply to okaykay]

Thanks, Kay. I wasn't sure which brands are gluten-free. I just know I don't accept Teva anything. I am trying to be strict re gluten-free and it's good to know my Rx is (Lannett). I have also gotten Mylan on occasion. So I will tell the pharmacist to stick with these two.

[Hidden in reply to Hidden]

Wouldn't it be novel if the FDA paid as much attention to the fillers used by drug companies as they do to the main ingredient? It's like trying to eat healthy broccoli and then covering it with a pound of melted processed cheese!

[Hidden in reply to Peanut31]

Hi Peanut. If you are lactose intolerant, might you also be gluten intolerant? It seems the two often go hand in hand. You might want to look up Teva levo as there are a lot of informative posts here about that brand. Take care. irina

[Peanut31 in reply to Hidden]

Hi yes, I’m both.

Best wishes

Peanut31