Just diagnosed with Hashimoto's

[jlo211]

I was diagnosed with Hashimoto's a week ago. I have been hypothyroid for two years but went to the GP in January as I was so tired all the time and the joint pain was unbearable. She ran a whole host of blood tests and referred me to endocrinology and the endocrinologist diagnosed Hashimoto's. He also thinks I have a Vitamin D deficiency, sleep apnoea and addisons so I have a barrage of tests coming up. He increased my levothyroxine, even though my thyroid function is within normal ranges and recommended that I take Selenium for the Hashi's. I have been signed off work for two weeks as the fatigue is unbearable at the moment. Does anyone have any advice for how I can combat this as I think I will be no better when I need to return to work.

[Marz]

Hashimotos is very common and in reality is an Auto-immune issue affecting the thyroid. I think you will find when the thyroid treatment is optimal for you that the sleep apnoea will abate. It can be caused by an inflamed thyroid.

Have you considered going Gluten Free ? There is lots of good advice out there - Izabella Wentz has a website

thyroidrootcause.org

thyroidlifestyle.com

You can sign up for a Newsletter too. Dr Alexander Haskell has also written a good book - Hope for Hashimotos.

I was diagnosed in 2005 but feel I have suffered most of my life. I was diagnosed with Crohns some 40 years ago....another auto-immune issue. Have learnt a great deal from this forum - am afraid with Hashimotos you really have to take control. You sound as if you have a good Endo who goes by symptoms - BRAVO

Have you had the Famous Five tested - Ferritin Folate Iron B12 VitD - all need to be towards the top of their ranges for the T4 to work well. If you have gut issues - then absorption of the vitals could be low.

Maybe good if you could post your blood test results with ranges....

Typing Hashimotos into the Search Box on the above Green Bar - may also reveal helpful additional information. If he thinks you have VitD deficiency - did he test for it ?

vitamindcouncil.org

[jlo211 in reply to Marz]

Thanks Marz. Yes I think he is a good Endo, he actually touched my hand and said 'I bet you get cold alot'. I think he really knows his stuff. He has referred me to the Medical investigation unit who will be investigating the Addisons and vit D deficiency. My original TPO antibodies were 626 (0.0 - 5.0) but thyroid was within normal ranges (was on 50mcg levothyroxine at time of test) and the GP didn't have a clue what that meant hence the referral. I went gluten free a few years ago as I was showing symptoms of Caeliacs but it didn't help. Might try again though. Thanks for the links, very helpful.

[Marz in reply to jlo211]

..interesting that you had gut issues a few years back. This is where it all starts I am afraid. Leaky Gut Syndrome allows food molecules to permeate the gut wall and the immune system seems them as enemies - and so the anti-bodies are created.

There are varying degrees of Adrenal issues - and Addisons is when the Adrenals are not working. Do think you would have more symptoms - however I only know what I have learnt from others here. Adrenal Insufficiency is rarely recognised by mainstream medicine. I also understand that the Saliva testing is the best. T4 needs good adrenal efficiency - so it may be worth having your FT3 tested to ensure the T4 - levo - is converting into the ACTIVE T3. T3 supports the Adrenals well - rwt3.com

It may still be worth having the tests done I mentioned above as they are NOT included in a FBC - Full Blood Count.

With all due respect to your good Endo - he does need to know more about the thyroid than cold hands So lets hope he continues to support you. It is so difficult to find someone that will think outside the box.

I too had normal TFT's - Thyroid Function Tests. The TPO was over 900. Do look at the websites I gave you to learn more and read the books. It is important to have knowledge to enable you to ask the correct questions.

Good Luck....

[jlo211 in reply to Marz]

meant to say that the endo did say that I was at the low end of the B12 range which is concerning considering I take a daily supplement for this as I have always suffered from anaemia. Any idea why the supplement isn't working?

[Hidden in reply to jlo211]

Because oral supplements don't work if you have B12 deficiency caused by malabsorption or autoimmune pernicious anaemia (PA), injections are required. I hope this on the ball Endo is testing you properly for PA, not just looking at the rather useless serum B12 test result. Explore the link Marz gave you b12deficiency.info and these are other tests your Endo could do:

Anti-intrinsic Factor

Anti-parietal cells

Active B12

Methylmalonic acid (MMA)

Homocysteine

You say you've suffered from anaemia but you don't say which type - Iron? B12? Folate? Iron deficiency can mask the haematological effects of B12/folate deficiency.

H x

[jlo211 in reply to Hidden]

Oh my! Information overload! The funny thing is, the Endo didn't say that he was going to see me again; I assume he will but he never said as much. There is a lot to take on board here and I will certainly try to remember to ask him. Seem to be sufferingfrom short term memory loss quite a lot at the moment!

[HarryE in reply to jlo211]

That's another hypo symptom

[Hidden in reply to HarryE]

And PA symptom! The best place to start is with a copy of all your results jlo211 of what has been tested so far, then you can take things from there.

[HarryE in reply to jlo211]

I think when you are hypo you don't absorb stuff well so might need more to get your levels up, as well as appropriate treatment. What supplement do you use? Some are better than others

[jlo211 in reply to HarryE]

vitabiotics feroglobin B12.

[HarryE in reply to jlo211]

Ooh I don't know that one. I know most people here recommended methylcobalamin, which is made by jarrows, among others. I'm sure someone will know a bit more than me

[Marz in reply to jlo211]

The advice hampster1 gives is always of the best - so please read and absorb. Your Endo is beginning not to look so wonderful if he is ignoring such important information and indicators of your health. The B12 serum test is not good - only about 20% of the result is available at a cellular level where it is needed. The parietal cells in the lining of the stomach secrete Intrinsic Factor - this binds to the B12 molecules in food and transports it through the gut to the Terminal Ileum where it is mostly absorbed. With gut disorders it may not be absorbed - hence a low reading even with taking supplements. Maybe try patches. I do not have a Terminal Ileum so have to work hard at my Iron Folate B12 levels....If you have Anaemia then it is surprising you have not been on B12 injections....or prescribed other Iron/Folate medications....

[wombatty in reply to jlo211]

B12 is not well absorbed via the GI tract. I take a sublingual B12 supplement (2500 mcg 2x/day); it's absorbed through the mucous membrane. You might want to try that before going to shots.

[Hidden in reply to wombatty]

Once you start supplementing you scupper any chances of getting a proper diagnosis and injections, you should explore all avenues before taking the sublingual route, they do absolutely nothing for a great many people. Try reading a PA forum for a day, you'll see that patches, sublinguals and sprays are generally used to desperately paper over the cracks in-between injections, whilst people fight to have their injection frequency increased.

[wombatty in reply to Hidden]

Thanks for the information, hampster1. I haven't yet seen the endo and don't know whether she'll consider B12, D3 etc; my internist doesn't. I've had noticeably more energy since I began taking sublingual B12. I was diagnosed with Hashimoto's 29 years ago, and I've never been seriously anemic. How common is PA in Hashimoto's?

[Hidden in reply to wombatty]

One study suggests up to 40% see here:

ncbi.nlm.nih.gov/pubmed/186...

"There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status."

And I assume they used the usual low cut-off point for deficiency (although it doesn't say), so the real % could be even higher. In fact, they say at the end that "a number of patients without B12 deficiency also appeared to respond to B12 administration". This doesn't surprise me, as the serum B12 test misses so many deficient people. They'd much rather call it a placebo than admit that the serum B12 test is non-sensitive, non-specific and liable to false negative results (which is well backed up by research).

Anyway, if you've been supplementing no point having any B12 testing done unless you come off them for a couple of months at least, maybe longer. Blood tests generally start to normalise very quickly with any sort of supplementation. Symptoms - and getting that B12 to cellular level - are a different matter. And that's why if you think you have a deficiency you should have as many additional tests as you can access before any supplements are taken. You can still have the antibody tests though (the intrinsic factor one needs a few days clear, maybe a couple of weeks to be on the safe side). The parietal cell abs can be done at any time.

Oh, and you don't have to have anaemia to be deficient.

H x

[wombatty in reply to Hidden]

I began taking B12 because I'm vegetarian. Don't want to risk not taking it, as I've no dietary source. I'll need to supplement one way or another for that reason. It might be good to know, however, whether my dosage is adequate. I'd rather not have to get injections if I can avoid it; the less often I have to see my internist the better.

[Hidden in reply to wombatty]

Yes I can see why you take it, don't blame you. Do you eat dairy? B12 is very bioavailable from dairy products. It's mainly vegans that are stumped from a dietary point of view.

[wombatty in reply to Hidden]

I eat some dairy, but likely not enough to cover my B12 needs. I very seldom eat eggs except in baked goods, and rarely even so. I tried vegan for a time, but I worried about protein - amount and balance. You seem very knowledgeable. I'll have to read your back posts.

[Hidden in reply to wombatty]

Eggs are not so good anyway I believe, milk is very good. I'm a PAS moderator so bang on about B12 here. Conversely, I'm often banging on about thyroid over there! I sometimes think they're part of the same condition.

[jlo211 in reply to Marz]

Hi Marz, So I went to the GP today and have managed to get a printout of my most recent blood results (not including thyroid);

Erythrocyte sedimentation rate 16 (0-15)

Total white cell count 8.3 (3.5-10)

Red blood cell count 4.8 (3.8-5.0)

Haemoglobin Estimation 126 (115-145)

Haematocrit 0.384 (0.36-0.46)

Mean corpuscular volume 80 (84-98)

Mean corpuscular haemaglobin 26.3 (27.5 - 32)

Mean corpuscular Hb. conc. 328 (300-360)

Red blood cell distribution width 15.1 (<14.5)

Plasma C reactive Protein 26.1 (<5)

There are heaps more like liver enzymes, bone profile and serum but these were all in normal ranges. So the ones outside normal ranges are ESR, MCV, MCH, Red blood cell distribution and C Reactive Protein.

GP has also given me another form to have blood tests for FBC & differential, Ferritin, B12 & Folate.

Can you let me know what you think and whether I need to ask for anything else?

Thanks

[Hidden in reply to jlo211]

Low MCV and MCH, and high RDW, suggest iron deficiency. High ESR and CRP indicate a non-specific inflammatory disease process, such as that which is found in autoimmune disease. And since you have only just been diagnosed with Hashi's that's probably why.

The ferritin (iron stores) test might show you are iron deficient, however it can be artificially raised when inflammation is present. You therefore might want to ask for further iron tests if your ferritin comes back normal - serum iron, TIBC, % transferrin saturation etc, iron tests are explained further here:

labtestsonline.org.uk/under...

H x

[Marz in reply to jlo211]

I'm far from an expert on blood tests - apart from the ones I do know and understand....hampster1 as you have observed is very well informed. It is good that you are having Ferritin B12 and Folate tested and hopefully the results will be high in the range. The ESR - if high usually indicates some inflammation in the body somewhere - as does the CRP.

Sorry not to be more helpful....oh did you have VitD tested ?

vitamindcouncil.org

[jlo211 in reply to Marz]

Thanks guys. The endo is doing the vit D along with cortisol etc just waiting for the appointment from medical investigation unit

[Marz]

b12deficiency.info/signs-an...

This could also be helpful....

[puncturedbicycle]

It can take time to feel better but if it's any consolation it sounds (as Marz said) like your endo is really on the ball. This is the first time I've ever heard of an endo recommending selenium and vit d, and it can also be a struggle to get them to increase levo when test results are within range, so it looks like you will get good care and possibly endo will be more flexible than most so if levo doesn't work for you you might be given options. I know that won't make you feel better immediately, but as my partner would say, it's better than a poke in the eye with a sharp stick.

Give your levo increase about four weeks to see if anything shifts for you, and if not, ring the endo's surgery and see if you can get a call back or an email address. Let endo know you're still ill and see what is proposed. Some find that a bit of t3 or t3 alone helps, or ndt. Sounds like this endo might work with you.

May I ask where(ish) you live? There will be many who will want to know where your endo is.

[jlo211]

Thank you. My nan was with me at the appointment (she's 85) and even she thought that the chap was very good and thorough. Makes me wonder if he or someone he knows is living with it? I am based in Surrey - under Epsom & St Helier trust if that helps anyone. Can you explain what ndt is?

He did say that re the Selenium it is relatively new but has been proven in some cases to gradually reduce the TPO antibody level. I am taking it daily so will see what the next lot of results say.

[HarryE in reply to jlo211]

Hi there! NDT is natural dessicated thyroid, the treatment that used to be used before thyroxine was invented. It seems to suit some people better as it contains t3 as well.

You might need to bear in mind that you might need to be off more than 2 weeks. I have Ben off since early January, recovery will take time. You might b OK by then, but don't put yourself under too much pressure xx

[jlo211 in reply to HarryE]

Thank HarryE, I must admit, I don't see how I will be better in two weeks. The GP signed me off because of the chronic fatigue and said that as I work in the city it may help eliminate stress as a possible cause of the fatigue but so far, I have slept all night every night and am taking naps during the day and my eyes just feel so tired all the time. My feet and hands are so cold it's like dragging around blocks of ice! x

[Marz in reply to jlo211]

Selenium was once in the soil and we did not need to supplement. You need to be on quite a HIGH dose to reduce anti-bodies - and LOTS of other things too. Best to read the book I suggested by Izabella Wentz.... Hashimotos - The Root Cause. She suggests around 400 mcg. I have been taking it since 2005 and it has been around for ages....and my GP here in Crete suggests stopping from time to time for about 6 weeks and then starting again. The body may become too accustomed to it....

[Sue777]

I am sorry you are feeling so ill. Sounds as if your Endo is a good one though as many won't increase medication if levels are within "normal" range. I was diagnosed in Dec and have been off work since January with similar symptoms to you but I am slowly improving. In the mornings I was freezing cold on waking and felt like I was coming out of a coma. Still cold now but not as bad. My advice is get yourself an electric blanket to help you warm up, take the supplements others have discussed. Rest and sleep as much as you can and be kind to yourself and if you feel down remember you are not alone and that it will take time. Are you able to take more time of work ? If so then take it as you need time to heal.