Help - feeling like a lost cause. Warning long post :/ ;)

[Sjp88]

I have never ever posted to a forum so this is new to me, I have often looked upon this site for advice and to read other peoples stories with great interest. I just wanted to post my story to see if anyone can relate or maybe give advice as I don't really know what to do at the moment!

I went to the doctors around 18 months ago as I was experiencing low energy, tiredness, sensitivity to the cold and never found it easy to lose weight. I was sent for full bloods and when I went back for the results they said I had Thyroid Antibodies and my thyroid had little function so I was hypothyroid, he started me off on Levothyroxine (can't remember what dose) and I was told to return in 6 weeks for repeat bloods, in these next bloods he said that my results showed that I had Pernicious Anaemia and that this and the Hypothyroid were due to an Auto immune disorder. I was told to start on the B12 injections, he said the Levothyroxine and b12 injection treatment would be lifelong but I should start to feel better quite quickly and I was to have my bloods done every 6 weeks. Over the next 12 months my Levothyroxine was put up gradually to 175mg which I still continue to take plus the 3 monthly B12 injections. At first I started to feel a little better and noticed a difference after I had my B12 shots but after a couple of months I started to feel unwell again and even worse than I did when I originally went to the doctors!

I'm lucky as my GP is lovely and has been my GP for years, he is very understanding. I went back to him with my symptoms and I had more bloods and a test for Ceoliacs. My bloods were fine with my thyroid levels normal and the Ceoliacs test was negative. As my symptoms were still continuing he said he was going to refer me to an Endo. My symptoms at this point were excessive sweating during day and the night to the point where my clothes felt damp when I was out and about and the sheets and pyjamas were wet when I woke up, this seemed to go along with an intolerance of heat. I was tired easily and any activity that was slightly physical exhausted me even though I used to be just fine doing it a few months before. I have some serious brain fog going on! My memory is not what it was, I am 26 and feel like this should not be happening! I write notes to remember and then forget where I put the notes! Also I feel like I'm clumsier than usual banging into things more often and I often have shaky/trembling hands.

I waited for my endo appointment and saw the registrar for the consultant who was lovely and I felt like he really listened to what I was saying. I told him about my symptoms and he asked about medication I was currently on. Aside from the Levothyroxine and B12 I was on Sertraline and the contraceptive pill Microgynon. The Sertraline I had been on for about a year before I experienced any thyroid symptoms and went on it as I really struggled with anxiety that in turn got me quite down. After hard work and a bit of a battle i was feeling better about things and felt like I had beaten some of the anxiety. Unfortunately shortly after this my lovely dad passed away suddenly and it obviously had an effect. The anxiety was still at bay but the doctor said it probably wasn't a good time to look at coming off it. The endo questioned me about the sertraline and symptoms and to be honest I felt like he was getting at the 'is it all in your head' kind of thing which naturally I am defensive about as I honestly don't believe it to be. I explained about my father and the fact that what I am feeling now is worse than when I was diagnosed as hypo and it was taking over my everyday life so naturally it was getting me down. He did listen to my other symptoms and did a quick physical examination and sent me for full bloods, a short synathcen test, a chest x ray and ultrasound scan and 3 24 hour urine collections. He said he would see me in 3 months for the results, I asked for a copy of the letters sent to the GP. These are the results I received which to me don't have all the figures I need to make sense but I'll tell you what I have been told.

The first letter I received shortly after my consultation said the following (this was before all my tests had been done) Recent investigations 11.06.14

Thyroid receptor antibody 1735

TSH 3.81

Glucose 4.4

Cholesterol 2.46

EGFR > 90

Anti TTG was normal

The letter also said for me to test my blood sugar regularly and I did suspect that sometimes my symptoms were related to low blood sugar especially as they would ease a little after eating but when I felt like this and tested, the lowest result I ever got was 3.9 ruling out Hypoglycemia. I'm about 3.5 stone overweight and would love to do something about it but at the moment exercise is near impossible as I'm in such a mess after little activity. He said I had a mild tremor and a heart rate of 100 . He said that I had no sign of a goitre and that there were a few striae on my abdomen. The letter basically ended with if the results come back clear I might be looking at a diagnosis of Hyperhidrosis.

So.... I had the tests I was sent for and got the following results - Lipid profile from the 11.06.14

Cholesterol 6mmol

Tryglyceride 2 mmol

HDL cholesterol 1.6

IDI cholesterol 3.5

This letter also stated that as my cholesterol was 'high' (I couldn't understand the rise from the first set of results!) I should be assessed for my risk of my cardiovascular disease and considered for treatment with Statins?! This to me was crazy as my cholesterol wasn't massively over, it can be higher when you are hypothyroid plus I cannot exercise as I used to be able to due to all the symptoms!! I asked my doctor about this and he said there was no way he was going to consider statin treatment and I wouldn' t have agreed to take them anyway. I don't want just another tablet!

The letter with my other results came mid August and said the following

Ultrasound of abdomen and pelvis was normal as were the kidneys, spleen, gallbladder, pancreas and liver with no free fluids in pelvic cavity and no significant abnormalities seen.

Short Synthacen test showed a normal response with a baseline of 642 and an incremental increase of more than 200.

Chest X ray all clear and urinary 5HIAA showed normal levels and the 24 hour urine levels of metadrenaline and normetadrenaline levels were normal.

Antibodies to adrenal cortex were negative

Renal function normal urea and electrolytes with a sodium of 137, potassium of 4, creatinine of 65 and urea of 2.8. FSH and LH were normal.

Oestradiol was normal and eGFR was >90

The letter was concluded by saying the results point against adrenal insufficiency and I would be seen in clinic as planned.

Well... yesterday was my appointment which felt like I'd waited forever for. I was seen this time by the consultant, while he was pleasant enough I honestly felt like I wasn't been listened to properly. As far as he was concerned my results were normal and I am 'just tired' through the whole appointment all I heard was 'I know you're tired sweetheart' I may just have been in a bad mood but I just felt patronised! I explained my symptoms were continuing and impacting my everyday life. I run a business and care for my disabled sister so It's important for me to keep going!

He also said one day you may find that you become under active and are diagnosed with hypothyroidism????? I asked him to repeat it which he did and I then went on to explain that I already have 18 months ago, the information was all there and he didn't even know. Doesn't fill me with confidence! He also seemed to write of the Pernicious Anaemia like it wasn't significant. Anyway after all this I was in floods of tears as I just couldn't keep it in - felt like an idiot! I basically said I wish I had never gone to the doctors in the first place as I feel worse now than I did before I was diagnosed. He is repeating some bloods and including some new ones (I think I'm having 9am cortisol level test, after taking something tonight, androgen profile, vit D and zinc levels plus more antibody tests, there are others but I can't read the writing!) - he said he is testing me for everything from an endocrine perspective (which it felt more like it was to shut me up) and if those results are clear I will be discharged and sent for care at a Chronic Fatigue Clinic, I don't believe it is that with all the symptoms I'm having I think there is something else going on. You really don't appreciate your healthy life until it's taken away from you.

So I don't know what I want from writing this I'm just at my wits end and could maybe use some positive outlooks, advice or similar experiences - also if anyone is starting out on investigations feel free to ask me anything, I don't know much but I'm happy to help if I can.

If you have read this thank you SO much as its more like novel than a post!

[Sjp88]

Thanks for reading and for your reply, It's so frustrating isn't it! You are told not to do your own research yet you are told nothing and just expected to trust their opinions. Thanks so much for the advice anything is much appreciated at the moment as I feel lost! Thank you

[twinks in reply to Sjp88]

Hi there nice to meet you sorry we're all in the same boat

My son's in a similar position including hand shaking he also thinks low sugar but can be thyroid too.

He's only just been started on meds his tsh was 11.4

He's been to gp for last 2 yrs extreme tiredness cold temp control up Creek digestive problems fast heartbeat muscle aches. All the above like yours are NOT just normal tiredness.

All the best your definitely not on your own x

I have hashimotos still struggling too

[Sjp88 in reply to twinks]

Hi Twinks, thanks for replying, sorry your son is struggling as well, I hope the meds have a positive effect for him. I imagine seeing your child feeling that way is not nice, my mum always says she just feels helpless. I'm lucky as I have a great supportive family, bf and friends. Sorry to hear you have Hashimotos - a couple have people have mentioned it in advice to me but I'm not really sure what it is and how it differs from a hypothyroid diagnosis.

Wishing you well xx

[twinks in reply to Sjp88]

Lol son is in his 30,s

[Sjp88 in reply to twinks]

Ha he will always be your child though even if he's a grown up! haha

[Spareribs]

Hi there, welcome but sorry you're here. I hope you feel a little better for just posting!

OK you're on 175mcg levo, B12 injections and still unwell, I see you're having more tests including Vitamin D - with calcium testing too I hope. You may find Vit D supplementation ups your mood (takes awhile) & may use that cholesterol hanging around. Iron & ferritin should be tested too - they're all in the mix to enable Thyroid function. We can sort one thing just to reveal another related problem. I too was told I had CFS (after half my thyroid out) hmmm... I wonder if tests 'from an endocrine perspective' are comparable with what most Thyroidies need?

It's difficult to suggest anything until you can get the recent test results (with ranges) - but don't take your levo before a Thyroid function test, it will skew results. You need TSH, FT4 and FT3 at least. I can't say anything about Adrenals or sweating sorry, but folk report cutting out gluten can reduce antibodies.

We only suggest here, best not stop any medication without discussing with your GP first.

Your consultant sounds sadly familiar & dippy 'tho.

Sorry I'm not much help - look forward to more info, best wishes, Jane

[Sjp88 in reply to Spareribs]

Thanks Jane, I do feel surprisingly better by posting! I knew I wasn't alone in these struggles but it's good to have it confirmed! I will definitely post my latest results when I have them as I have no idea how to interpret them. Thanks for your comment and advice Sarah

[Clutter]

Sjp, welcome to the forum.

Doctor's drive me mad sometimes, they're doing a battery of tests but seem to miss the obvious, which is to test your FT3. Your TSH is too high for someone on medication, as RFU has said, some people need it to be just above or below 1.0. TSH rises in response to the body signalling that T3 is low. T3 is the active hormone which is needed in every cell and when it is low you get hypothyroid symptoms. 175mcg is quite a high dose and would usually suppress the TSH so it's possible you have some thyroid hormone resistance.

I'd recommend getting a private FT3 test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin... You can post your results with the lab ref ranges in a new question for interpretation and advice. If FT3 is low you will benefit from the addition of T3.

[Sjp88 in reply to Clutter]

Thanks for that Clutter, any advice is much appreciated and il check out that test. Hope to post more recent results soon. Thank you!

[gabkad in reply to Clutter]

Possible too that she is not absorbing the 175 mcg dose well. Must be on empty stomach with water only. Or take it at night before bedtime so while the GI tract is moving slowly, the levothyroxine has more contact with the small intestine and more gets absorbed.

These may also be an issue here.

Sjp88, try the above if you are not doing them. There is a possibility that your absorption is poor.

[gabkad in reply to gabkad]

Diet may also be an issue. Low blood glucose levels can be from metabolic syndrome. Updownupdown. Change of diet may help with this problem. Cut the sugar and easy to digest carbohydrates. Replace with complex carbs and consume only balanced meals with protein, fat and complex carbs. No snacking. Snacking causes all sorts of insulin issues.

[Sjp88 in reply to gabkad]

Thanks Gabkad, appreciate the advice, I'm working on improving my diet, especially cutting out the sugar as I reckon I have way too much, I curb the low sugar feelings usually by grabbing the nearest thing to me, often containing the most calories and sugar which I know doesn't help! I'm trying little and often with my meals. I take the levo in the morning with water but I may swap it to night to see if it has any effect. Thanks again

[gabkad in reply to Sjp88]

Sjo88, it makes more sense to have three defined meals per day. Balanced ones. That way you won't get hungry between them. I know it takes organization and planning but aren't we worth it?

I had blood sugar issues years ago and stopped the stupid stuff. No sugar. I used to buy a huge apple pie on Sundays when my kids were in their teens and so there were 5 people for dinner.......... Monday = brainfog! Once I stopped all this sweet baked garbage, my brain fog went away. Even though the thyroid was not optimal.

[LouiseRoberts]

RFU - please remember that only SOME people need their TSH to be below 1 in order to feel well. Thanks

Louise

[LouiseRoberts]

An FT4 test would also be helpful!

Please can you drop me an email with the details of this endo, so if anyone contacts me to ask if we have heard anything about him, I can say that we have had a less than positive report! Thanks!

[e-mail]

L

x

[Marz]

So sad to read your journey - but well done you for being able to write the detail - albeit as others have said some important bits are missing. Not by you but by the Docs. Reading about your Anaemia is very concerning and the three monthly injection is obviously not enough for you to feel well. Injections were once given monthly in the 80's - then bi-monthly in the 90's and now three monthly - which makes me think it is a cost cutting exercise There is a campaign going on to enable people to buy B12 OTC in the UK ( over the counter )...the sooner the better. I have weekly injections as I live in Crete and can buy them so cheaply myself. You can buy them on-line and there is good information on the PAS forum here on HU and also lots of information how to self-inject.

The symptoms of B12 deficiency and Hypo do overlap in places. Were you advised to take Folic Acid when you have your injections - they work together in the body with the Folic Acid binding to the B12 molecules - which in turn prevents it from being excreted too rapidly in the urine. You cannot overdose on B12 so I would take Jarrow Methycobalamin 1000 twice daily - under the tongue. You will also need to take a GOOD B Complex to keep all the B's in balance. Further testing of B12 will be invalid as the results will be skewed due to the supplements. So do not let your Doc test you and then say all is well - which I have read here before

b12deficiency.info/signs-an...

The above link should give you lots of information - and probably more than your Doc has given you.

So do post the results and ranges of Ferritin - Folate - B12 - VitD - Iron - they will not be included in the full Blood Count....

Martyn Hooper has written a good book - Pernicious Anaemia, The Forgotten Illness and B12 Deficiency. He is a sufferer and a speaker at the TUK conference this year....

Wishing you well and keep posting...

[Sjp88 in reply to Marz]

Thanks for the lovely reply Marz, great advice which I will take on board, had the bloods today so I will post the results when I receive them. Thank you

[Marz in reply to Sjp88]

glutenfreeschool.com/

These on-line summits are good with excellent speakers....could inspire you. I listened to one last year and certainly hardened my resolve

[shaws in reply to Marz]

Hi Marz, Just to say I have had P.A for more than 20 years and have never been given or told to take Folic Acid. I have quarterly injections too.

[Marz in reply to shaws]

...know how you feel I had the Terminal Ileum removed over 40 years ago - where B12 is absorbed - and no Doc has ever mentioned the need for B12 injections...in spite of it all being in my notes....

[Hidden]

If I were you I would also ask for your GP to check your autoantibodies and inflammatory markers - especially your ANA and Rheumatoid Factor as well as ESR and CRP to rule out other systemic autoimmune diseases such as Lupus. In all likelihood these diseases would show up in joint pain and stiffness with renal changes - but as you have Pernicous Anaemia and Hypothyroidism these are more likely and could be causing/ worsening the sweats and general unwellness. For some RA and Lupus can start with excessive fatigue and sweats before the joint pain sets in.

Hang in there as you obviously have a good GP and something is obviously going on to make you feel so unwell. When I was your age I was often very unwell and overweight too with frequent sweats as well as alopecia and terrible eczema and allergies but somehow never really clocked that this was unusual - just thought it was me!

Now I can look back and see hypothyroidism, RA and possibly Lupus too - autoimmunity staring me in the face if only I had known and confronted it then I might be better off now.

Good luck getting it sorted out soon hopefully. You do need to put the lab ranges next to your results next time as labs vary a lot.

Twitchy x

[Sjp88 in reply to Hidden]

Thanks Twitchy, Interesting advice on the autoimmunity, it sounds like your still struggling now? I'm sorry it took you a while to get sorted and diagnosed. I just feel so different to how I used to, just like a different person sometimes! I think the bloods I went for today had the auto antibodies test ticked on it. I couldn't read the endos writing either so I don't really know what they have sent me for. I had 11 different little tubes filled so at least I'm lucky and being tested for a few things just not sure what! I will post my results and ranges when I have them. Best wishes to you and thanks for the info. xx

[Ansteynomad]

Did nobody else spot this?

Thyroid receptor antibody 1735

Aren't they Graves antibodies?

[eeng in reply to Ansteynomad]

do you mean it's possible to be hyper and hypo at the same time? That would really mess someone around. Just like this lady in fact. Would account for the fast pulse and sweating too.

[waveylines in reply to Ansteynomad]

So sorry to hear about what has happened to you -am afraid as others have already said it is an all too familiar story -your Endo does not sound on the ball at all. You might want to get a second opinion and ask to be referred elsewhere -if you ask Louise she has a list of good docs/specialists -you could look at those.

This link might be of help explaining the antibodies test:-

labtestsonline.org.uk/under...

Hugs x

[Sjp88 in reply to waveylines]

Thanks for the info waveylines I'll have a read and I will also speak to Louise. I was shocked about the very little knowledge the Endo had on my current situation. My notes were in front of him, he could have read them before I went in! He didn't even know I was already Hypothyroid... words fail me! Thank you for the advice, best wishes xx

[Clutter in reply to Ansteynomad]

Ansteynomad, yes they are Graves antibodies but Sjp isn't hyperthyroid.

Sjp, It would be a good idea if your endo tested thyroid peroxidase and thyroglobulin antibodies for autoimmune hypothyroidism (Hashimoto's) too.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[Hidden]

Sjp88, I get those sweats and terrible heat intolerance. I have done two adrenal stress profiles and I know I have low cortisol. Re your synacthen test, your numbers didn't seem to go up much. I do wonder if you have sluggish adrenals? I think it's more normal for the numbers to double after the injection.

Is it worth looking at NDT or getting some of your Levo dose reduced and adding in some T3?

In the meantime you could take at least 1,000 MCG of Vit C and some vit B5 which are both good for your adrenals.

Your story is so similar to many others including myself. I've never felt well since being treated, and levo did absolutely nothing for me. Your cholesterol will come down naturally in time with optimal thyroid treatment.

I felt very much improved being prescribed iron and folic acid. If your folate is 7 or below you are deficient. The Vit B 12 injections will work a lot better for you with good levels of folate and iron. If Vit D is low this needs to be addressed too. Your thyroid meds with work a lot better if all of the above are good in the range.

I read a lot of stuff that antidepressants and thyroid meds can produce awful side effects. I tried sertraline and just could tolerate it. T3 is very good for depression. Anxiety can be coming from being under active or poor adrenal function. You have a lot on your plate, can't help thinking this may be knocking your adrenal function too. Cortisol is necessary to push the T3 into the cells, so could well be that your body is struggling with this. A good amount of iron is required to make the T3 travel to the cells too.

What are your temperatures like? Have you tried taking them before getting out of bed in the morning?. Mine were mid 35's before treatment. I still struggled a lot to get my temps to increase, I had no joy until I was on prescribed iron. If your temps are low (normal is 37deg) you may still be struggling thyroid wise.

[Sjp88 in reply to Hidden]

Thanks for the great info and advice Helcaster, I have wondered about sluggish adrenals, however I know from reading other peoples stories that endos don't seem to think that exists and they have to be kaput before you are taken seriously! I'l have to try the iron and folic acid, they tested my folate and VitD levels today so I should know those soon. Interesting about the Sertraline, the Endo blamed the excessive sweating purely on the Sertaline - he may be right but I was fine on it for about a year before I got diagnosed as hypo and with the PA. Hopefully if my T3 can be raised I can reduce the Sertraline. Would love to just stop taking everything and be 'normal' again but I know it won't work like that! My temp is usually around 36.5 however I have never checked it in the morning so may be worth a look. Thanks so much and hope to post my results soon. x

[nickstraw]

Hi I could write the exact same think myself , how you feel and describe your symptoms are what I feel like have done for two years and I dont feel myself at all , im always tired and cant do the things I use too, I have now just put it down to my underactive thyroid and my age so I have modified my life got fid of my sandwich shop on gone back to selling on e bay.

im a 54 year old man and ive always been a active person diy etc getting on my bike , going to the gym everyday but I have to push myself all the time , now I have been having throat problems and have to have a camera down my throat , when I tell th doctor I have been nothing but ill since being diagnosed 2 yrs ago he just looks at me and I don't think they understand what a underactive thyroid is like , " On when u r on your tablets all will be fine " he said well NO its NOT...

Just keep your chin up and remember you are not alone on hear ,

take care

Nick

[Sjp88 in reply to nickstraw]

Thanks Nick, my wonderful dad was called Nick - good name :). I'm sorry you have had a rough time and also no longer feel as 'normal' as you used to - its very frustrating and a great shame that you have had to modify your life due to it. I know what you mean with the tablets, it's almost like 'here's another tablet, go away'.

It's helped me to know that I am not alone, just a shame for us all to be in these situations. Wishing you well Nick x

[nickstraw in reply to Sjp88]

thank you hope u feel better soon Nick x

[faith63 in reply to nickstraw]

nick..have you gotten private testing done or tried some t3? It is possible, with some further investigation and some change in meds, you could do a lot better.

[nickstraw in reply to faith63]

were do u get private testing from ?

[faith63 in reply to nickstraw]

Are you in the UK? If so, i don't know exactly. If you can use this website to ask this question to the Administrator or maybe you can search it on this website too. They say with proper meds, most people feel well and back to normal..i have never found the right dose yet. There is desiccated thyroid made from pig thyroids, synthetic t4 and synthetic t3. All of it can be bought without a prescription. Many self treat rather than allow their doc's to leave them ill. Maybe you don't have to stay feeling poorly! I'm sorry that you lost your business. Oh, also, low b12 and iron and vitamin d seem to be commonly low with hypo and will make you feel run down too.

Do you have Hashimotos? Do you know?

[nickstraw in reply to faith63]

thanks you not sure about hashimoto's i do have a underactive thyroid

[faith63 in reply to nickstraw]

You have quite a learning experience ahead of you! I hope you pursue it. Look how great they are! The Administrator is already here to help you!

[helvella in reply to nickstraw]

Have a look at the main Thyroid UK website. It has details of several sources of tests (including some tests where you can do a simple finger-prick to get the blood samples). Some offer discounts to Thyroid UK members.

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

Rod

[nickstraw in reply to helvella]

thank you your very kind I will I think get a private test thanks Nick my main problem at the moment is this feeling of my throat being constricted the dr says its not a goiter as its to high so I am having a throat camera and a x ray beginning Nov , I am still convinced its connected to my thyroid problems

[Marz in reply to nickstraw]

The Thyroid UK website posted by helvella will also explain Hashimotos...or you can type the word into the SEARCH box on the green bar at the top of the is page then press ENTER on your keyboard and lots of posts will come up relevant to the chosen topic. Good luck

[Pink_Bear]

So sorry to read your story. You've had some great advice here from people who know much more than me. All I can add is that I felt much better after I went gluten free - less tired and better able to absorb my medication because my gut was no longer irritated. I'm not Coeliac, but obviously have some intolerance. It also helped me to lose weight.

[Sjp88 in reply to Pink_Bear]

Thanks Pink Bear, I have had fantastic advice, so glad I posted especially after umming and ahhing about it. I have heard others say that gluten free has helped - I just wouldn't know where to start, I get overwhelmed by all the info on different foods and diets, I shouldn't as I'm sure it's simple I just need to do my research. Thanks for the info x

[Ctb567]

Sorry you going through so much at the moment, I'm kind of going through the same thing but it doesn't sound as bad as yours. I'm 19 and currently with 3 different hospital departments and I'm nowhere near getting a diagnosis. My mum has hypothyroidism and my gran has coeliacs but I'm negative for both and I also have had a low b12 for over a year now and they haven't even tested me for pernicious anemia! The drs told me they should have but they 'forgot to' and then told me to get one of the other hospital departments I was with to do it. I'm going back to uni in a few weeks and I don't think I'm going to be able to cope with everything this year either :/ I hope you get to the bottom of your problems, I suppose its good that you have some decent dr's looking after you.

[Sjp88 in reply to Ctb567]

Thanks Carly S123, sorry to hear that you are suffering too, I know I'm a bit older but I know it's not easy looking around and seeing your friends in their teens and 20s 'living' there lives when it just seems impossible for you. It's just lovely when they 'forget' to test you for basic things... :/ I know it's difficult but positive mental attitude is essential to get you through. I'm not always positive believe me but It helps me through as I lead a busy life and i just won't and can't stop. I hope uni is not too much for you although the thought of it will be overwhelming. I'm sure you are stronger than you think you are. Good luck and all the best - you can do it! xx

[Ctb567 in reply to Sjp88]

Thank you, I think I do need to work on a more positive attitude at the moment as I've just been miserable with it all recently! Hopefully our dr's will up their game a little bit.

[Marz in reply to Ctb567]

How is your low B12 being treated ?

[Ctb567 in reply to Marz]

Hi Marz, its not been treated as its only 'borderline' and I keep getting passed around to different people.

[Marz in reply to Ctb567]

What is borderline - do you have the result ? needs to be towards the top of the range for you to feel well - along with Iron - Ferritin - Folate and VitD.... In Japan the range STARTS at 500 so if you are below 450 you will have symptoms of B12 deficiency....

b12deficiency.info/signs-an...

[Ctb567 in reply to Marz]

It was 163 (150-900) then 148 (150-900) and the last one was 223 (180-900). I was told I was on the low side on folate and ferritin but they don't really care about it for some reason. I was borderline on vitD too but they treated it.

[Marz in reply to Ctb567]

Even with that very small improvement you are EXTREMELY LOW. I would say your GP is being neglectful. You need to be towards the TOP of the range...have you read the link I posted and viewed the signs and symptoms of B12 deficiency ? Have you been tested for Pernicious anaemia ?

You may find some helpful answers to your situation on the PAS - Pernicious Anaemia Society on HU - from people who know more than me....

[Ctb567 in reply to Marz]

Thanks for the advice I have been on the PA section but its my doctors who are unwilling to do anything that I ask. I'm hoping that the endocrinologist will be better and give me the injections, fingers crossed! I haven't been tested for PA yet because 'they forgot to do it', I just really wish I could go private. The link is very useful, I go armed with it on monday.

[Marz in reply to Ctb567]

Good luck

[faith63]

I am always stunned, and i don't know why at this point, that with all the testing they didn't even do a free t4 and a free t3 would be very helpful. It is possible that you have t4 toxicity, from t4 not being converted into t3 and the meds pool in the blood. You can have a combo of hyper and hypo symptoms with it, like you do with the trembling and high heart rate. Or maybe you are just under medicated as your TSH is too high. Do you have Hashimotos? Your depression and anxiety are related to hypothyroidism, so is high cholesterol and low iron.

[faith63 in reply to faith63]

I'm sorry. It looks like you weren't tested for Hashi's. This doctor, like Clutter says, has totally missed the obvious. He is pretty terrible.

[Sjp88 in reply to faith63]

Thanks faith63, I think its pretty clear just to look at me that somethings not right but they just do not see it. We are supposed to put our trust in these guys!! Thanks for the advice and suggestions, symptom wise I do feel all over the place. I had never heard of Hashimotos until I came across this site. It has never been mentioned to me before, so I'm not really sure what it is and how it differs to Hypothyroid. Thanks for your comments and advice. ~Wishing you well x

[faith63 in reply to Sjp88]

Hashimoto's is an autoimmune disease, where your own immune system thinks the thyroid gland is a foreign invader and attacks and kills it off. This can cause a drop of thyroid hormone into the blood stream, causing hyper symptoms. Apparently, your tests show you do have some issue with your immune system and you have some anti bodies that are a thyroid marker..graves? Please do some research.

[Marz in reply to Sjp88]

As it has been mentioned Hashimotos is an Auto-immune condition. I was diagnosed in 2005 and have had Crohns for over 40 years - also auto-immune. Hashimotos is the MOST common thyroid condition in the developed world - over 90% of cases - and that figure exists even without many people not being tested - including you I am always staggered that people are told that having Hashimotos is the same as normal under-active thyroid as the treatment is the same. Such a huge mistake as having one auto-immune condition can lead to another - so we have to be vigilant.

This is where the gluten bit comes in.....gluten molecules from wheat, barley etc. can adhere to the gut wall and cause inflammation leading to LGS - Leaky Gut Syndrome. The gut wall is then permeable and the molecules can seep through. The immune system - close by - is on red alert and senses an enemy has arrived and goes into attack mode. The thyroid molecules are similar and so the immune system begins to attack the thyroid as it does not recognise the difference.

So why is gluten a problem - possibly in the past it wasn't - but over recent years it has been modified so much to resist storms/pests/heat etc. and is not the wheat eaten by our parents or grandparents. Not quite GM but nearly. It is also sprayed at least 14 times with various chemicals both before going in the ground and after....( as informed by Moggie ! )

So its not difficult to see that Hippocrates was right when he said - let food be thy medicine and medicine be thy food....

Let's hope your Doc reads this forum and can learn a thing or two

Happy to answer questions.....can also suggest good websites and books.... x

[faith63]

thyroid.about.com/od/t3trea...

Here is a link to information on reverse t3. They mention the use of time released t3, which the doc's i respect, are not in favor of.

[jayz2008]

Hi, i was housebound for 13 weeks due to medical negligence, im still fighting my way through the fog now. Its only when i took a variety of vitamins and hydrocortosine cream that i managed to have some sort of life again but i know that levo keeps me hypothyroid no matter what dose i take so am looking to change over to armour thyroid. My adrenal fatigue is still bad though and i feel is a direct consequence of being on levo for 10 years.

[jayz2008]

Good luck and keep fighting xxxxx

[Lukibird]

Has anyone referred you to a rheumatologist? A lot of what you are describing comes under the fibromyalgia banner. I too have a great deal of your symptoms and too be honest most doctors don't seem to have a clue about treating or understanding

[Angel222]

Hi there, I have Hashimoto's too. I feel like a lost cause with my GP. I went up to the practice yesterday to get my blood test results and the receptionist they were back in but the GP hasn't reviewed them. I go back today and I'm told they haven't come back! So frustrating!

Keep fighting and don't give up.