Losing hope - feel like a hypochondriac

[Josephine2]

Hi I am new and I apologise in advance for my first post being very long.

I am a 30 yr old female, diagnosed with hypothyroidism in 2013. The diagnosis came as a very big shock since no one else in my family had it at the time. I was immediately started on thyroid hormone replacement.

The years went by and I was consistently being tested for thyroid every 6-8 weeks because my levels have never ever been right and I was always symptomatic. With each blood test result came a new dose change, being moved up, down etc etc.

In August 2013 I was diagnosed with iron anaemia and my level for this has never been right either. I had an iron infusion arranged by haematology in May 2016 which boosted my ferritin to 187 (15 - 150) in July 2016 and over the past year my ferritin is once again becoming depleted and is currently 64 (15 - 150) as of December 2017. I take iron once a day, GP says this level is still very good. I am monitored every 3 months.

My haematologist in February 2017 also said I would benefit from B12 injections every 3 months since my B12 is below 500 and I have neurological symptoms. I had my first injection in September 2017 and have had my second one in January 2018.

I was diagnosed folate deficient in November 2016 with a level of 2.3 (2.5 - 19.5) and I take folic acid 5mg a day. I am yet to receive my folate result for December 2017.

I was diagnosed vitamin D deficient in 2013 with a level of 43.2 (25 - 50 deficiency supplementation is indicated) and given 800iu once a day. My level as of December 2017 is 62.3 (50 - 75 suboptimal advise on safe sun exposure and diet)

I feel crazy for writing all of this feeling the way I do but I have the capacity to write all this because I feel so badly let down by the GPs and endos I have had and the one good endo I saw has moved to London. I have told my partner I have considered seeing her there but he is very much against this, saying I shouldn't have to travel so far to see her.

My symptoms are having a considerable impact on my quality of life - I look pale, like I haven't slept, eyes watering the second I step outside most mornings, fingers and toes going cold, heavy periods, getting allergies and infections out of nowhere, flaky skin, bloating, puffy and dark eyes, weight gain though I am not obese, rib pain, back pain, losing my hair, constipation, tiredness, memory loss.

I am going to see my GP on Monday because I feel so let down and deserted by my current endo who only offers me phone appointments and has offered me an open clinic appointment I can book 10 months from now. When I have queries about my medication or symptoms or results he only calls me. And I think to myself what is the point of having an open appointment if he doesn't want to let me see him? Am I a bad person? Is this what I deserve?

So if anyone could offer me support, anything, to let me know I'm not alone I would appreciate it. I have been shunned by managers with my hypothyroidism, partner and family keeping out of anything health related...I just hate how this illness isolates me even though I don't show it at times.

Thank you

Dec 2017 (175mcg levothyroxine - endo aware I take it correctly and is adamant he will not increase dose)

TSH 4.86 mIU/L (0.27 - 4.20)

FT4 14.8 pmol/L (12.0 - 22.0)

FT3 3.7 pmol/L (3.10 - 6.80)

Thyroid peroxidase antibody 708.3 IU/mL (<34)

Thyroglobulin antibody 375.5 IU/mL (<115)

[ThyroidJ]

I’m so sorry you feel bad. I’m new to all this myself but I’m seeing how rubbish the treatment seems to be for people. I’m not very experienced but I do know you can complain or at least you could complain to Patient Advisory Liaison Sevice (pals) I had a social work placement with them and they help with concerns about your medical care or lack of care

[greygoose]

Why won't your GP increase your dose? Because you are still hypo and need an increase. The fact that your TSH is over-range should tell him something, even if he knows nothing about FT3 - which is awfully low! Ask him what he thinks ranges are for!

[Nanaedake]

I'm sorry you're feeling so isolated. Sadly it's a common experience for people with thyroid conditions and unresolved symptoms. Maybe because it's an invisible disease and there's a lot of misconceptions and some stigma about thyroid conditions. Maybe also because it affects our ability or desire to socialise and because of the extreme exhaustion that takes a toll on our family and friends time.

If you liked your previous Endo then it would be worth sticking with them. At the end of the day if you got a phone appointment with someone you like it would be better than a phone apt with someone you don't like.

Your current Endo is wrong not to increase your dose as most people don't feel well until their TSH is 1 or a little lower. You should ask your GP to test your vitamin levels, B12, folate, ferritin and vitamin D as they can all be low in people with thyroid conditions. Your Endo is keeping you hypothyroid and it's unreasonable to withhold needed hormone as you are symptomatic. If you increase your thyroid dose and your symptoms don't resolve then you would simply decrease the dose again and look for other explanations. What reason did the Endo give for not increasing your dose?

Could you give him a copy of this document by Dr Toft, physician to the Queen when in Scotland?

Professor Toft - Counterblast to Thyroid Guidelines

rcpe.ac.uk/sites/default/fi...

[Josephine2 in reply to Nanaedake]

Do I post my vitamin levels?

[TSH110]

You are not a hypochondriac and it is your life - and not your partner to dictate what you should do for your own good how could anyone be so presumptuous! Good endo’s are hard to come by - I think a journey is small price to pay for your good health.

You are undermedicated hence you feeling unwell.

My life changed with this disorder when I took control and responsibility for my own well being with the help of this forum.

It was the best thing I ever did!

[Saggyuk]

Bless you, I know exactly how you feel as was in exactly the same position for 20 years so you're definitely not alone. I lost jobs and everyone around me thought I was just lazy and it's horrible and you start doubting yourself. To be honest, it's very unlikely for any docs to actually help you feel any better as they have always been more than useless so it's best for you to start reading up and sorting yourself out - we have all been let down but the docs!!

You do need an increase in your thyroid dose and it's clear this doc knows nothing and none of them should leave you outside the range so change docs or show him the NICE guidelines maybe. You need a higher dose of Vit D also - they put me on 3000iu when I was on your level.

I had all your issues so the only other thing I can recommend is going gluten free - this changed my life and many here have been much better doing this. This caused all my deficiencies as caused absorption issues, hairloss, cold, back problems and blisters and basically everything and even needed a drop in thyroid meds after going GF . I can now feel awake all day and everything else has gone so definitely worth a try. It needs to be for at least three months and 100% gluten free to see if will work so read up on cross contamination if you want to give it a go.

I hope you feel better soon

[Josephine2 in reply to Saggyuk]

Thanks