Help and advice please I'm at my wits end

[Sbpfpp]

Underactive thyroid since prior 1980s started taking thyroxine in 1980s had fluctuations all through life. Finally doc put on 250 micrograms in 2014 on this dose.

However since 2014 been asked to be referred to endocrinologist gp refused

Started to feel really bad this year

Fatigue, more pain than normal and getting worse ,brain fog ,cold all time fingers nose blue and cold ,skin issues pins needles thickening skin ,raspy voice weight gain Hair loss loss of feeling in fingers

I also take

tramadol prn

Gabapenthin 300 mugs Tds

Nurofen prn

Ferrous sulfate200mgs Tds

Alfacalcidol 0.25 mgs daily

I have a b 12 every 3 months

In March TSH went up to 40 asked for an endo referral refused

Got worse had to go off work as too ill to function at work

Bloods repeated in may and TSH level 100.42 ( 0.10-5) gp phoned and stated sending referral as emergency to endo !!! As lab phoned her and they were concerned at my levels ( thank you blood lab )

On that test it showed

Serum 25-HO vit D3 level 37.1

Serum 25 -HO vit D2 level not detected

Free T4 level 4 (8-19)

Saw first endo who seemed to have some knowledge of antibodies etc sent thyroid interference studies for bloods results below

Results of bloods done on 06.07.17

Haemoglobin 116

White cell count 6

Platelet count 288

Haematocrit 0.366

Urea and electrolites normal except slightly raised creatinine of 103

EGFR 52

Liver profile normal except ALT of 41(0-40)

Bone profile normal

FreeT4 2

TSH 118.80

Thyroglobulin antibody - positive

Thyroglobulinresult awaited

And antithyroid peroxidase antibody 285 (0-75)

Endo upped Levothyroxine to 400 per day 200micrograms in morning 200 micrograms in evening

After 9 weeks of taking higher dose

Results of bloods on 13.09.17

TSH 115

T4 3 ( should be over 10)

T3 1.6 (2.1-6)

Saw diff endo yesterday who had not read my notes so asked same questions as first had no idea when I asked could it be hashimotos ? Said anti bodies had nothing to do with it and basically accused me of not taking meds ( oh yes I really want to feel like death be in this much pain and look like the incredible peeling woman !!!) he says he wants me to come to hospital every week for 5 weeks where they will administer a weeks worth of thyroxine in one dose orally and I have to stay there for 4 hours after taking meds is this something others have experienced ? Does it help?

Completely confused. I called and have asked to see first endo prior to starting this treatment

Any advice or help would be appreciated

[Nanaedake]

Hello Sbpfpp and welcome to the forum. I'm so sorry that you are so unwell. If you have taken your thyroid medication religiously on an empty stomach and not eaten or drunk anything for an hour afterwards and have left 4 hours between taking your thyroid medication and taking any supplements, medication or anything else that could interfere with your thyroid medication absorption then I would ask more questions about your intended treatment.

Ask them why they want you to go to the hospital? It is possible to administer levothyroxine in a single weekly dose but I would want to know how it's going to help them to find out what the problem is, what tests they are going to do and how the investigations will be carried out? If they are simply doing it because they think you are non-compliant (don't take your meds) and you know that you take your medication religiously and correctly then I would object.

I expect the reason you have to stay for 4 hours afterwards is because you should not take any medication, supplements or anything that could interfere with your thyroid medication for 4 hours after levothyroxine for best absorption so they are checking to find out how your medicine is being absorbed. I would ask them how they are going to monitor that and what they intend to discover and what they will then do?

As you are on other medication besides thyroid hormone, could it be interacting?

I know it's difficult when you feel so unwell but if you can post the laboratory ranges next to ALL your blood test results people will be able to give you much better advice and suggestions. You've added some lab ranges but not others. We really need to see them all to understand them as labs vary.

Just seen the posts below and I think I would follow Diogenes suggestions. The hospital's approach will simply prolong your diagnosis and proper care.

[greygoose]

To have a TSH of 115 when on 400 mcg levo, means that you are not absorbing it. Do you take your levo on an empty stomach, one hour before eating and drinking anything other than water? And at least two hours before any other medication or supplements? If so, then that points to a gut problem, and rather than playing silly b****rs with giving you a weeks dose on Saturday - which, incidentally probably won't help and could make things worse - they should be referring you to a gastroenterologist.

[Sbpfpp in reply to greygoose]

Yes I take Levo on empty stomach no other meds or food or supplements I take them religiously as I want to get better as soon as I can as I'm terrified of losing my job. I only have the normal ranges that I have put on the messages as they are on the letter I received some have ranges next to and some not

Where would I find a list of normal ranges to compare with please

[greygoose in reply to Sbpfpp]

There's not such thing as a list of 'normal ranges'. Every laboratory has it's own ranges, depending on the machine it uses for the analysis.

[diogenes Remembering]

I have found a reference to a case like yours. Its rare but obviously the situation exists. It suggests you ought to try injections of thyroxine to bypass any malabsorption. then you should find a difference between taking by mouth and injecting direct into the bloodstream.

Indian J Endocrinol Metab. 2012 May-Jun; 16(3): 466–468.

doi: 10.4103/2230-8210.95716

PMCID: PMC3354865

A curious case of refractory hypothyroidism due to selective malabsorption of oral thyroxine

Nishikant Damle, Chandrasekhar Bal, Ramya Soundararajan, Praveen Kumar, and Prashant Durgapal1

Author information ► Copyright and License information ►

This article has been cited by other articles in PMC.

Go to:

Abstract

There are very few cases in the literature in which refractory persistent hypothyroidism responded only to parenteral doses of levothyroxine and no evidence of any malabsorptive disorder could be identified. Here, we present a rare case of a 35-year-old woman with refractory hypothyroidism who responded only to intravenous doses of levothyroxine. We also discuss possible causes for the same.

[Sbpfpp]

Thank you I am goin to take this information to my next meeting with endo i feel like he was saying that he didn't trust me not taking my meds ( I usually take when with hubby so he can substantiate I take them ) why anyone wouldn't take a medication that has been prescribed to help them is beyond me. So I feel belittled by this attitude

[humanbean in reply to Sbpfpp]

The research paper that diogenes refers to above can be found here :

ncbi.nlm.nih.gov/pmc/articl...

You might want to print it out and give it to whoever you see at your appointment.

[greygoose in reply to Sbpfpp]

It's a common attitude. It's called 'Patient Blaming', and doctors love to do that. It's nothing personal, just their general attitude towards patients.

However, it does happen that some people do not understand the seriousness of their condition, and just take their levo when they think about it. We have had posts like that on here. But, it's usually people who don't have much in the way of symptoms to remind them.

Don't let it upset you, but do take a positive stance on this. Take the paper diogenes mentions above, to your doctors, but also get them to investigate a possible absorption problem. All avenues need exploring if you're to get well.

I would also suggest that you go through the articles and papers that diogenes has posted on here, and the replies he has given to others, because he does talk about doctors giving weekly doses to patients, and the disadvantages thereof. You can do that by clicking on his name, which will take you to his profile.

[Sbpfpp in reply to greygoose]

Thank you , I have t posted for a couple of weeks as I'm feeling so bad at the moment I can't put the lab guidelines on as these were not sent to me I will request them by email today but the attitude of the consultant and secretary is quite hostile at the moment which is difficult. I will take. The information from the links with me and ask for another appointment as the second consultant has arranged for me to go and have the absorption tests as he states that " there is no cure or treatment for the antibodies". My husband and I are now completely confused also he didn't listen to me at the consultation and has written things down incorrectly. I again will note this in the email I'll send him

So I'm back to square one. Feeling awful .. 1 x dose of levothyroxine per week for 5 weeks then an appointment for the results 3-4 weeks after that

Don't know how much more I can take of this is anyone else being delayed like this ?

[greygoose in reply to Sbpfpp]

Well, your endo is right that there is no cure for Hashi's, but you can lower the antibodies yourself by going 100% gluten-free, and taking selenium. Have you tried that?

However, with your TSH so high, it could be that your thyroid has now burnt out, and the antibodies gone, but do try it, anyway.

But, you're not back to square one, and whilst they don't appear to be listening to you, they are at least testing your absorption. As humanbean said, it's unfortunate, but you have to prove to them that they are wrong, but once you've done that, things should get easier. Just hang on in there! And the gluten-free diet and selenium could make you feel a bit better until then. Have you had your vit D, vit B12, folate and ferritin tested, by the way? If they are all low, then that will go a long way to proving that you do have a serious absorption problem.

Take care. x

[humanbean]

Since they've asked you to go to hospital, take your Levo, and stay 4 hours, I wonder if they think you might be making yourself sick after taking it, but I'm only guessing.

I understand how horrible it is to have doctors disbelieving you, but sadly, I think you are going to have to prove to them that they are wrong to doubt you. It will be unpleasant, but I don't think it can be avoided.

Although it wasn't in the context of taking thyroid meds, I've been in the situation where doctors didn't believe a word I said, and I know how humiliating it is, so I can sympathise and empathise.

Regarding your blood test results :

Your vitamin D levels are low. Don't worry about the vitamin D2 - most labs never even test it and when levels are tested I've only ever seen very low results reported. The important one is vitamin D3. Ideally this would be around 100 - 150 nmol/L.

Read SeasideSusie's advice to the author of this post on the subject of vitamin D, magnesium and vitamin K2 :

healthunlocked.com/thyroidu...

.

Your haemoglobin of 116 suggests that you are suffering from iron-deficiency anaemia, and need iron, but without other blood test results to confirm - ferritin and serum iron for example, I'm reluctant to suggest that you start supplementing.

.

Thyroglobulin antibody - positive

antithyroid peroxidase antibody 285 (0-75)

The above two results for antibodys show that you have Hashimoto's Thyroiditis, more commonly referred to in the UK as autoimmune thyroiditis or autoimmune thyroid disease. It is this that has made you hypothyroid.

Thyroid antibodies attack the thyroid and, slowly but surely, they destroy it. As thyroid cells are damaged and destroyed they release their thyroid hormone contents into the bloodstream, and these higher levels of hormones can be detected on blood test. This destruction of the thyroid waxes and wanes, and so blood test results fluctuate, sometimes dramatically.

Many people on this forum have found that going ruthlessly and religiously gluten-free helps reduce antibody numbers. Some people discover eliminating milk-derived products helps (because by eliminating milk it eliminates lactose and casein). Some people have to do both. Some people have to try other things like eliminating nightshades, or eating a low histamine diet. It is all very tiresome trial and error. Personally, I've gone gluten-free, got lots of benefits, and haven't tried anything else. If you eliminate something from your diet and it doesn't help, go back to eating it again, or your diet could end up very restricted.

.

I've just re-read your post and spotted that you are taking ferrous sulfate three times a day. Since you are anaemic despite this it suggests that levo isn't the only thing you don't absorb. Also you are taking alfacalcidol, a vitamin D supplement I know nothing about. And yet your vitamin D level is poor too.

Have you ever had an endoscopy or colonoscopy? Have you been checked for helicobacter pylori, gastritis, stomach ulcers, crohn's disease, coeliac disease, ulcerative colitis, or any other condition that might make your absorption of nutrients and medicines very poor? Have you had bariatric surgery to help you lose weight?

Something is going on, but it isn't clear what. The medical profession is currently blaming you but they can't keep that up forever. Make sure that you get an urgent endoscopy and colonoscopy after they've got over blaming you. Because something is going on, and the doctors must urgently find out what it is! Another thing you might want to suggest is a "capsule endoscopy". It is a little camera that you swallow and it takes photographs of your gut as it moves through your intestines.

en.wikipedia.org/wiki/Capsu...

Good luck.

[Sbpfpp in reply to humanbean]

Thank you I shall take all of this onboard.