Made to feel like a hypochondriac

[Hypo51]

Hi I was diagnosed last month, been on 25 mg Levo then upped to 50, still feeling rough, legs arms and muscles ache, as well as my neck, dr done tests for arthritis and vit d and rheumatism, all come back ok and basically got told there's nothing wrong with me, I feel exhausted carrying 1 bag of shopping home from my local shop. Also have pernicious anemia for last 6 years and getting b12 shots and ain't felt well since 2011. Had loads of time off work I'm off sick now, got told I'm depressed which I don't think I am. Drs don't seem to have a clue about thyroid problems, made me cry today because of his remarks

[Hypo51]

Thanks for replying, I will get onto that, I don't think my b12 as been tested for ages as I get the shots, but dr said all is normal with all other tests, I have a referral for endo but not until august so hopefully then I'll get some answers,

[SlowDragon Administrator]

Have you been tested for Hashimoto's- high antibodies, if not ask for this to be done.

You need to know because if you have Hashimoto's you need to consider hidden food intolerances, usually gluten.

Do you have test results for B12, folate, vitamin D and ferritin. If so post them here. It's common for these to be low and we need good levels to utilise thyroid hormones.

plus post your thyroid results - you need to know TSH, FT4 and FT3. But FT3 is rarely tested by many NHS labs. You are entitled to copies of your own tests under data protection, ask receptionist and allow a day or so before arranging to collect them.

50mcg is a low or starting dose. You will need a retest 6-8 weeks after any dose increase. We have to step up dose slowly and wait while our body catches up. It can be very difficult to wait patiently.

All thyroid tests should be as early in morning as possible and fasting. Do not take Levo in the 24 hours prior to the test, delay until straight after.

As you are on B12 injections do you also take vitamin B complex.

Always make sure you get same brand of Levo at each prescription too

[Hypo51 in reply to SlowDragon]

Blimey so much to remember..i don't think I've had the hashimoto b12 not tested for a while now but should be good cos I have the shots every 12 weeks.. no I don't take vit b complex.. what does that do?? I take the Levo in the morning so you're saying to leave it on the morning of blood test and also to fast.. and same branding in meds.. this is all good information.. thank you I'll get my blood results hopefully and post them.. thanks for the tips

[Marz in reply to Hypo51]

It is possible you need your B12 injections more frequently - many people do. B12 works in the body with Folate or Folic Acid which is contained in a B Complex. It also helps to keep all the B's in balance.

As PA is auto-immune it is possible you have Hashimotos - also auto-immune. Further testing of B12 will show inflated results in the blood so of little importance. You need thyroid anti-bodies - Anti TPO & Anti Tg tested to confirm Hashimotos.

Are you on any other medication ?

There is a Forum for PA here on HU. Keep asking questions here on this busy forum and if you follow advice you will soon feel much better. Will look out for your results with ranges.

If you feel you need your B12 jabs more often you could supplement with an under tongue lozenge - JARROW Methylcobalamin B12 from Amazon. There are also sprays for under the tongue. I have weekly B12 jabs for deficiency - not PA and I also have Hashimotos 😊

[Hypo51 in reply to Marz]

Hi Marz, my dr always says I'm on treatment nothing wrong with me. I have found it really useful already, I feel like I've been told nothing by my dr, pa took a long time to be diagnosed properly, was just kept being given the tablets and iron, was feeling pretty much ok until early last year, then just kept feeling unwell on and off missed lots of time off work, now back off sick again, dr said if I get sacked a don't have a leg to stand on, I don't know what they expect you to do when everywhere aches and as weakness.

[Marz in reply to Hypo51]

Have you had the tests mentioned in my earlier post ? I had Hashimotos diagnosed at 59 back in 2005 - so yes it can take years for things to be diagnosed when Docs refuse to get up to speed with research and understanding the importance of testing the correct things ....

[Hypo51 in reply to Marz]

I've not had any of the other test you mentioned, I take meds for ibs which I have done for years now, noticed a difference in that in the last 6 7 months, it's very frustrating, I have an endo app beginning of august, hopefully I'll get some answers there.

[Marz in reply to Hypo51]

Always best to have the tests done before seeing the Endo so you can discuss the results

There are millions of receptors for the Thyroid Hormone T3 in the gut/immune system. Your levels could be low - hence the IB syndrome. it is a syndrome ! These are the Thyroid tests you need - TSH - FT4 - FT3 - Anti-TPO and Anti-Tg. SlowDragon also mentioned the same tests. so best to make a shopping list

[Hypo51 in reply to Marz]

I'm having my t4 tested in 2 weeks time as just increased Levo up to 75mg, but dr as put no other test on there, to be honest I don't understand a lot about this yet, I'm getting loads of good advice with I'm finding really helpful 🙂Thank you

[Marz in reply to Hypo51]

The T4 is the hormone that is produced by the Thyroid. It is a storage hormone and has to convert into T3 in order to be ACTIVE in the trillions of cells. Sadly Docs think they can treat you by just testing the TSH and FT4 - which is nonesense. What if the 75mcg of Levo you are taking does NOT convert into the ACTIVE thyroid hormone ? How would your Doc know if the FT3 is not tested. I despair. Are you able to have Private Testing done so the correct tests are done ?

thyroiduk.org The website where you can read and learn

[Hypo51 in reply to Marz]

Will the endo dr do all these different tests? And yes I understand now what you mean, I have an app with my nurse this month, she is the 1 who actually picked up on my thyroid as I told her I have a slow heart rate, always below 60 well below some days, along with other symptoms😕, she as been much better than gp. I will ask her if she can get the tests done, and if I don't get any joy I will have to consider getting these done privately. I do read on the thyroid website but get a bit confused with it all sometimes, I have took down these test so have them stored now on my phone. Thanks for the advice

[Marz in reply to Hypo51]

Sadly all the tests I have mentioned are rarely done - hence people remain unwell. Some have been Hypo for 25 years before discovering they have Hashimotos. It is a disgrace. So please try to have the tests done privately and start your journey to wellness ....

[Hypo51 in reply to Marz]

God it is a disgrace, can they give you different treatment then? And why are these tests not done.

[Marz in reply to Hypo51]

When the TSH test was created back in the early 70's it was described as the perfect test and nothing else required. Also that Levo/T4 was the only pill required - so said Big Pharma. Sadly both statements are untrue .... and it has taken a forum such as this to reveal the truth to the masses ....

[Marz in reply to Marz]

youtube.com/watch?v=tOb2POQ...(Not working as expected?)

[Hypo51 in reply to SlowDragon]

Hi slowdragon

Just got some of my results these was before diagnosed with hypo

Serum tsh 49.65mu/l

Serum free t4 level 9.6

Vit 48nmol/l

Hope this can help

[Hypo51]

Oh really this is not good.. I can only hope better than my gp

[silverfox7]

Always post the ranges with any results as they differ from lab to lab so we can answer properly, otherwise we would just be guessing.

It is. Dry much a learning curve knowing what to do and what not to do. If you look of the Thyroid Uk site you will find loads of useful info. They run this forum and are also mentioned by NHS Choices. Anything you don't understand shout out! We have all been there and understand how you are feeling.

[Hypo51]

Hi silverfox7 I need to get my results so I can do that, I did go on thyroid uk and found it very useful just reading other people's comments helped knowing I am not alone.

[palberts01]

HI I'm no expert but I have had the exact same symptoms you are experiencing to the point of being in tears. When I went to my endocrinologist she asked did you take prescription vitamin D I gave you..I told her NO was,scared to take 50,000 units of vitamin D. She was very angry my vitamin D level was 16 normal range 60 to 100. She told me if I didn't wanna do what prescribed she could not help my problems. Let me tell you ...I've taken 3 doses one 50,000 cap every week ( 1x per week) and my symptoms are going away lost 5 pounds,fatigue virtually gone, muscle pain and the "feeling" of not being able to haul my ass around just abut GONE. I was not believing her that vitamin D would take all that away. But it is, I feel 70% better.

I know you said that yours is normal levels. But I would get your doctor to try for a 4 week trial. After that drop dose to 1000mg a day for maintenance. The 50,000 that I take is different than over the counter so ask for script

[Hypo51 in reply to palberts01]

Hi

That sounds good but my dr won't agree to anything, as he says I'm cured, I'm only hoping endo dr will have a better attitude, I've just done a bit of ironing and that's it now I can't do anything else, The bit d sounds like its good and quite quick working,

[Katepots]

Git! Well we won't make you feel like a hyperchondriac here!! Unless we all are 😂

What the GP tells you is normal and what actually is are two different things.

B12 600+ under 500 will start to cause neurological changes.

Vit D 60-100

Folate and Ferritin mid range.

T4&T3 top of ranges

TSH under 2 but ideally under 1 to feel well.

If you have pernicious anaemia then you are do not a hyperchondriac, you'll feel like crap. Your GP is a complete moron.

Make sure you get your thyroid antibodies tested for Hashimotos Thyroditis, auto immune and very common. You would need to be gluten free etc but get tested first.

Some great books out there, get reading as it's the only way we can help ourselves. Most of us knew nothing to start with.

Mary Shomon books are easy to read for general thyroid info.

verywell.com/thyroid-basics...

thyroiduk.org.uk/tuk/index....

stopthethyroidmadness.com/

Anything you want to know just ask.

[Hypo51 in reply to Katepots]

Hi katepots

Thanks for the feedback and yes git he is😀, I'm not sure on any of my levels at the min but am going to request results, and thanks for the support about being a hypochondriac, 🙂. I've certainly been made to feel that way for sometime, it's great that everyone as so much info too, I will def look into the books. Why do you need to be gluten free?

[Katepots in reply to Hypo51]

Gluten and Casein look like the thyroid to the body (molecular mimmickry) so when ingested and they get in to your bloodstream via leaky gut(intestinal permeability) the body sees an invader so sends T cells out to attack but then mistakenly also attacks the thyroid.

If you have Hashimotos it's pretty much a given that you will have leaky gut. 90% do.

In a past post I've listed all the things that I find have helped me, may be worth a look.

Good luck with tests.

[Hypo51 in reply to Katepots]

Oh really I need to find out then if it is hashimotos, thanks for all your advice. Yes will def look at your past posts.

[MariLiz]

It takes around six weeks for the thyroid medication to become effective, so if you are very recently diagnosed, it is early days yet. Your dose will need to be increased too I expect. I'm sorry to hear that you have Pernicious Anaemia too. Strangely thyroid problems and PA often go together. The only thing that is making you depressed is feeling unwell and having an unsympathetic doctor!

[Hypo51 in reply to MariLiz]

Hi mariliz

Diagnosed 4-5 weeks ago, so I'm in early days so to speak, yeah it is strange was really unwell then back in 2011 which took ages then to diagnose, but think the aching joints and muscle pain is worse with the thyroid, probably had thyroid problems for a while but kept putting it down to menopause, or as dr said wear and tear, 🙁

[MariLiz in reply to Hypo51]

It took me a while to get the PA diagnosed, I'd already got thyroid problems. The aching joints and muscle pain I have now, was diagnosed as fibromyalgia two years ago. It's hard, the more you have going on medically, how do you pinpoint which condition is causing which symptom?

[Hypo51 in reply to MariLiz]

I put a lot of mine to menopause recently as am in menopause, had loads off work waking up late and the pains in joints and muscles is too much some days, my dr said I've no fibromyalgia no arthritis or rheumatoid arthritis, yes I see what you mean when we have more than 1 illness,

[Katepots in reply to Hypo51]

@MariLiz Aching joints could be lack of vitamin D.

I also had to stop eating nightshades so potato,tomato,aubergine...

Potato especially, if I've eaten the next day my hips are excruciating.

[Hypo51 in reply to Katepots]

I was tested for vit d but came back normal, really potatoes can make you that bad with pain. I need to get clued up 🙂

[Jeast]

Assume you've read through all the docs on the pa forum? The same crap happens to pa patients as thyroid sufferers. If you're getting b12 injections, your serum levels SHOULD be high. There's a lot to know.

[Hypo51]

I can't keep up with jeast, so many different symptoms but all the same in both pa and thyroid. 😐

[SlowDragon Administrator]

If your GP won't do these tests then get tested privately

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

Test ideally before you see the endo if possible- as previously mentioned always test early in morning and fasting. Delay taking Levo until after test

You are likely to have Hashimotos- then you need to look at gluten

But don't be surprised if endo is not up with latest research on leaky gut & gluten & vitamins

[Hypo51 in reply to SlowDragon]

I'm doing test next Friday as was told to up my dose to 75 mg, I will do as been told early morning and no Meds before test plus fasting, thanks for the advice, I don't know much about this but from what I've been reading on here I think it's hashimotos too, I don't think drs can surprise me anymore since the last few years of mine as been a battle, made to feel like a hypochondriac, I can only hope they will be better. Think I'll have to invest in a cookery book if I need to go gluten free!