Help, not sure what to do. I have a large Goitre, symptoms matches Hashimoto/Hypo, no help from GP

[Skywalker18]

Hi, so I am 29 years old female. I have diabetes type 2 and PCOS. Just a bit background,

So, in 2014, I joined slimming world and lost 5-6 stones with them. I went from 21stones to 15 stones in October 2015. I was losing weight so fast that the doctor told me, to not take anymore metformin for my diabetes. My diabetes was gone as I controlled it so well through my diet. However, I went went off the deep end, so by January 2016, I went to 16 stones.

Now, as of 04/08/2018, I weigh 18 stones, 3 pounds. I cannot shift the weight. I think the main problem is, my thyroid.

I noticed that my thyroid was getting bigger, I ignored it, thinking there was nothing wrong. I went to see the GP in Dec 2017, GP said it was a goitre, referred me to the NHS. They messed up with my appointment, referred me to the worng clinic. I didn't see anyone until May 2018, the doctor I saw at the hospital wasn't a specialist. I spoe with her for 15 minutes, did a blood test then. I had to go back for a utra scan on my neck. It was confirmed, I did have a goitre, it's not cancer, just benign nodules ect. So, 6 months, to confirm what I already knew. I knew I had a goitre since last year and all they told me was nothing.

I been going to the doctor repeatedly for the last few weeks, telling him, I may have Hashimoto or Hypothyidism.

Over the last few years, I experienced symptoms,

>Exhausted, I am so tired all the time, I can sleep over 12 hours and still tired.

> Constipation, I have to watch what I eat but I have this all the time, really embarrassing especially when I am at work and need to go the toilet.

>I have dry skin, literally white patches. I have to keep moisturising my hands, feet all the time.

>Weak nails, for some reason, my nails keep breaking, I have to keep them really short, any longer, and it will crack through the middle and start to peel away

> Hair loss, this could be due to PCOS, but, I have nearly lost my hair. I cry all the time when I see my hair.

> Weight gain, I can’t lose weight, no matter what I do, I eat salad, vegetables, protein and can’t lose anything. I am doing the same thing I did in 2014, lost stones then, now, nothing. The difference between 2014 and 2018, I now have a goitre.

> I have heavy period all the time now. The doctor I saw at the hospital said it was menorrhagia. With PCOS, I struggled to get periods, but now I get period every month and it’s heavy bleeding.

> Hearing issues: I sometimes, struggle to hear people, I have to keep asking them to repeat themselves. Sometimes, I kept thinking, what is going on, am I going deaf…sometimes, I agree to what the person said, even though, I didn't understand what they were saying. I was not going to ask the person to repeat it for the 3rd time.

> Low Libido: I don’t feel anything, sometimes, I feel, why bother, it takes a while, even then, I don’t feel anything.

> Depression: I have heavy depression, I am always constantly sad, unhappy about my health, life and work. It’s getting to the point, I feel suicidal, I think about it all the time. I did take anti-depressants but that was years go. The only reason, I don’t do anything is because of religion and my mum, I can never do that to her. I don't want to feel like this, even now, when I am typing this, I feel deep sadness and I am crying.

I am so upset, I cry all the time. I tries to discuss this with my GP, he brushes it off. I have had blood test done, he said my TH was fine. But he did do another blood test. I have a Vitamin D deficiency, so was given tablets to take for that. GP says to me, keep eating healthy, which I do and get a hobby, less stress. What kind of advice is that, what about my treatment for my big goitre on my neck?

My last blood test in July 2018, I was told that I need to buy and take Methyl B12 and Folate. - I am not sure what these tablets is supposed to do?

I am so depressed, I have no one to talk to, not even my family.

I found this website by chance. I truly need help. I know in my heart, I have a thyroid disease, Hashimoto or Hypo but my GP said, I don’t, despite all my symptoms telling me I do.

My nurse even told me, Goitre can grow for no other reason. I lost 5 stones in 2014-2015, did not have a goitre then, now I do, I have all this symptoms. I am so tired, I don’t know what to do.

So I been looking into a private. Maybe, get a blood test done privately. I live in Luton, Bedfordshire. Please can someone help me, do you think I am going crazy….do you think I have a thyroid disease….if so…what should I do when my GP is ignoring what I am telling him. Private seems to be my last option….

Also, my GP told me, if I remove my large goitre, I will differently then get Hypothydism. GP has not given me any advice apart from taking vitamin D Tablets, B12, and Folate.

Also, I work, but low salary, but for my health, I am willing to pay the cost.

Thank you in advance for any help given.

--------------------------------------

UPDATE:

Hi, I will need to get my results from the July blood test. However, I have the blood test results I did at the hospital in June 2018.

Results:

Large mid-line goitre measuring approx 6 inches in diameter, Scan shows this is a benign multi-nodular goitre.

It shows I have normal thyroid functions test with Free T4 of 21.9pmol/l

TSH of 1.71 mu/l and negative anti-TPO antibodies of 9 IU/ml.

Adjusted calcium was normal at 2.50mmol/l

Haemoglobin of 156 g/l

MCV was low at 76.5

Liver and renals functions was normal apart from a slightly raised total protein of 84 g/l.

[Saggyuk]

I'm so sorry to hear you feel so bad - docs are pants so start ignoring them.

I've never heard any of them tell people to get B12 or folate - if your blood tests show deficiency, it needs to be looked into to determine a cause and treated?????? As per the guidelines they are supposed to follow???

You need to post your blood test results and ranges for advice. If you don't have them, you can request a print out from your GPs receptionist - it is illegal for them not to give them to you so don't accept a no. Most of us here pay for our own more in depth blood tests which aren't hugely expensive so we can help advice on anything missing that needs to be tested. But get all the results you can from doc first to get started and post on a new thread including anything you're taking or have been presrcibed.

I imagine your quite deficient in a number of things among various other issues including stomach/absorption issues.

YOu are not crazy - I felt exactly like you did for many years since my teens and you likely have pants docs who are useless like many of us here have had but have hope, I feel so much better now

[Saggyuk in reply to Saggyuk]

Ps - you should seriously consider a gluten free diet with the diabetic issues and nutritional/stomach issues although you might want to get a coeliacs blood test first although try GF regardless and healthy GF. It needs to be 100% gluten free including cross contamination and for at least three months to see if you improve. It reversed all my problems you have listed but too late for my thyroid as it was already dead but I did reverse diabetes and everything else.

[silverfox7]

Is there a different doctor you can see at the surgery? Lots of you pay privately to get testing as generally the NHS don't do all the rest we need to show we have problems. We are often low in nutrients but your doctor should be finding out why you are low. This forum is run by Thyroid Uk and they have a website with many helpful suggestion. HealthUnlocked is recommended by NHS Choices for thyroid dysfunction so take suggestions etc from there to present to your doctor and take someone with you to your appointment as they are often more proactive then. If they question that tell them your memory isn't brilliant and you don't want to forget anything that has been suggested. Print out any info from Thyroid Uk and point out they are recommended by the NHS. if he still won't listen then you need to think about finding another doctor. You have already told us where you live so you can always start another thread asking for a doctor who is good for thyroid issue and ask for replies by private messages as we don't discuss these things openly.

But read the site I mentioned and shout out if anything you don't understand. Nothing is too trivial as we all understand as we have all been where you are now.

[Skywalker18 in reply to silverfox7]

Thank you so much for the reply. I am seeing another GP from the same surgery on 16th August. I need to discuss my last blood test which showed about the Folate and B1, so need clarification on that.

Could you please tell me which form I need to take.....the GP I saw, his a diabetes specialist, while good at that, does not believe I have hashimoto or Hypo despite my symptoms, especially the large goitre. I am going to try again with another GP, if that one fails to take my concern, I would have to go private. What is astonishing, not once did my GP discuss treatment from my goitre, just told me, not to have surgey otherwise I will have underactive thyroid.

[RedApple]

"My last blood test in July 2018"

Skywalker18, please post the details of this blood test, plus any previous ones. What were the numbers (and their acompanying ranges)? If you don't know, go to your surgery and find out. Without this information, members here can offer little support.

[Skywalker18 in reply to RedApple]

Hi, I will need to get my results from the July blood test. However, I have the blood test results I did at the hospital in Junw 2018.

Results:

Large mid-line goitre measuring approx 6 inches in diameter, Scan shows this is a benign multi-nodular goitre.

It shows I have normal thyroid functions test with Free T4 of 21.9pmol/l

TSH of 1.71 mu/l and negative anti-TPO antibodies of 9 IU/ml.

Adjusted calcium was normal at 2.50mmol/l

Haemoglobin of 156 g/l

MCV was low at 76.5

Liver and renals functions was normal apart from a slightly raised total protein of 84 g/l.

[helvella]

You do not say who told you to take Methyl B12 and folate? A doctor?

If you are suffering Pernicious anaemia, you will need injections of B12. Taking oral B12 might be enough to make a difference and to affect test results, but not to fully treat Pernicious anaemia. I strongly encourage you to go to the Pernicious anaemia forum, here:

healthunlocked.com/pasoc

As RedApple says, post results, and if you have B12 and folate results, post them on the Pernicious anaemia forum.

[Skywalker18 in reply to helvella]

Hi, thanks you for the reply. Once I had the ultra scan on my neck, I went back to my GP.

He told me, my thyroid was normal. Though, I have a vitamin d deficiancy and prescribed me to take tablets.

I requested him again for a blood test. Because I had a blood test the next day for my diabetes, he added on an extra test as per my request. I have a monthly check up appointment with my nurse regarding my diabetes. She is very nice and kind. She told my my diabetes was going down, so the victoza was helping.

She was reading the results, there she mentioned about B12 and folate. However, I am not sure if she understood the results clearly about this. I would need to talk to the doctor about this.

[Tile in reply to helvella]

She has a low MCV if I am not mistaken pernicious anemia usually shows HIGH MCV. She probably has iron deficiency anemia.

[helvella in reply to Tile]

MCV is not a test for Pernicious Anaemia (PA), as such.

High MCV is a sign of PA. It is a late stage sign which many never see. Combined iron-deficiency and PA can result in low or "normal" MCV even in those suffering seriously from inadequate B12. (In these cases, we would expect to see higher RDW - red cell distribution width.)

I quote from the pasoc:

25% of people who are B12 deficient don't present with macrocytosis.

[Portia1974 in reply to Tile]

B12 deficiency can exist for many months or years before macrocytic anaemia shows up in the blood. All the while causing symptoms and potential damage. While a low MCV is a clear indicator of iron deficiency (and this needs to be addressed obvs), it does not rule out b12 deficiency/PA.

stichtingb12tekort.nl/weten...

[Tile in reply to Portia1974]

Weight loss is a indication of PA. Just think she is losing blood from periods and B12 and Folate deficiency is fairly common and a lot more common than PA. Anyway she probably should first build up.B12 levels before supplementing methylfolate. Most likely she has MTHFR issues , which are a lot more common than PA and often occur in PCOS. If she has PA than she wont absorb the B12. Maybe they can do an intrinsic factor to rule out PA. But she is quite young for PA. Guess I'm seeing horses and not zebras.

[Portia1974 in reply to Tile]

"Weight loss is a indication of PA."

It's a possible indication of PA. However the coexistence of PCOS and hypothyroidism, both of which usually lead to weight gain, could well be countering that particular symptom.

"B12 and Folate deficiency is fairly common and a lot more common than PA."

Treatment for B12 deficiency is the same irrespective of whether it is caused by PA or by other absorption issues. (Achlohydria, hypochlorhydria, atrophic gastritis, coeliac, crohns, SIBO etc) Malabsorption is the most common cause of b12 deficiency.

"But she is quite young for PA"

Older people are more at risk of B12 deficiency by virtue of the fact that the gastric function slows with age (or to put it another way, gastric atrophy increases). But gastric function can be impaired at any age and is especially common in those with hypothyroidism.

pernicious-anaemia-society....

"If she has PA than she wont absorb the B12"

Yep. Or in fact gastro dysfunction other than PA can impair absorption. The very presence of a B12 deficiency is indicative of an inability to absorb. Other possibility is a dietary insufficiency which is unusual and not indicated in the OP as diet appears to be carefully monitored.

"Maybe they can do an intrinsic factor to rule out PA"

Firstly ruling out PA does not change the fact that there is a B12 deficiency, the most likely cause of which is SOME form of malabsorption of which PA is only one form. They should defo test for PA in the presence of a b12 deficiency. BUT....Tests for IF antibodies are specific but not sensitive. While a positive Intrinsic factor test means a 98% likelihood of PA a negative test does not rule it out either. (Around 40% of those with PA will return a negative IFab test) Parietal Cell antibodies is a more sensitive test BUT it is not specific to PA and could also mean Atrophic Gastritis. So ideally both should be tested, along with HoloTC (Active B12), MMA, and homocysteine levels (These are elevated in b12 deficiency) to get as clear a picture as possible.

"she probably should first build up.B12 levels before supplementing methylfolate"

ANY supplementing before full tests are carried out will skew test results and therefore render it impossible to rule anything out or in. Full tests need to be done first. After supplementation, tests are meaningless.

"Guess I'm seeing horses and not zebras."

The problem with trying to distinguish between horses and zebras is, in the absence of proper light (ie more info) one is only looking at a shadow or a silhouette. And until the lights are switched on, one cannot rule out horses or zebras and should probably consider both until one can.

There is also interesting article regards increasing evidence of a link between PCOS and hypothyroidism:

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

[helvella in reply to Portia1974]

"But she is quite young for PA"

Couldn't agree more, Portia1974 - so much so that I will paste the text you linked to:

Age

Pernicious Anaemia is often considered to be a disease that affects the elderly. And whilst it is true that many elderly people do suffer from the disease it is a disease that is diagnosed at all ages. The survey of our 889 of our members revealed the following:

The ages of respondents at the time of diagnosis of PA varied from less than 10 years (4 individuals) to greater than 80 years (12 individuals). The most frequent age at diagnosis was 41–50 years (228 individuals).

Our youngest member is 18 months old and our oldest is 99 (and soon to reach her 100th birthday). It seems to be the case than most elderly patients have developed the disease because of age related gastric atrophy whilst younger patients tend to have the classic autoimmune Pernicious Anaemia caused by either not producing any Intrinsic Factor or producing an antibody that attacks and destroys any intrinsic factor that has been produced.

pernicious-anaemia-society....

[Tile in reply to Portia1974]

BRAVO. But I'll bet she doesn't have PA.

[Portia1974 in reply to Tile]

Hopefully not!

[Tile in reply to Portia1974]

VICTOZA. causes malasorption of B12 and Folate and any ora

l.meds. VICTOZA also causes thyroid tumors....blackbox warning.

[1Cazza]

Sounds like you also have a B12 deficiency, there is a facebook group for that New Beginnings B12 Deficiency Information and Support Group <3 i suggest you join it and have a good read up as well as getting your blood results. Thyroid and deficiencies seem to go hand in hand, if you have one you seem to get another and so on. The GP should never have told you to go buy B12 supplements, he should have treated you. Join as many groups as you can there are also vitamin d groups, knowledge is power.

[Skywalker18 in reply to 1Cazza]

Hi, thanks you for the reply. Just copied this again from the above posts.

"Once I had the ultra scan on my neck, I went back to my GP.

He told me, my thyroid was normal. Though, I have a vitamin d deficiancy and prescribed me to take tablets.

I requested him again for a blood test. Because I had a blood test the next day for my diabetes, he added on an extra test as per my request. I have a monthly check up appointment with my nurse regarding my diabetes. She is very nice and kind. She told my my diabetes was going down, so the victoza was helping.

She was reading the results, there she mentioned about B12 and folate. However, I am not sure if she understood the results clearly about this. I would need to talk to the doctor about this".

The nurse told me to buy it. I haven't as I wasn't sure about it. I was able to book a appointment with amother GP for the 16th August to discuss my July blood test, B12 and folate. While my nurse is great, I don't think she understood about that.

[Tile in reply to Skywalker18]

Most diabetes meds intefere with B12 and Folate absorption. Don't know if this was brought up by rxing doctor.

[Tile in reply to Tile]

Victoza has been linked to thyroid tumors the FDA almost didn't approve it for that reason. It also disrupts absorption of not just B12 Folate but just about any meds you take orally. Every rose has it thorns.

[Hidden]

I was going to ask if you'd had B12 tested as some of your symptoms could be B12 deficiency. You would have been advised to take folate ( folic acid) with B12 as they need good levels of each other to work. If ( and it's a big if) you have a problem absorbing B12 then tablets will be of minimal use and you'd benefit more from injections ( while still taking folate orally) You really need to see a copy of your blood tests before you started any supplements to check all your levels.

I don't know if a goitre and/or hypothyroidism affects absorption of vitamins but it's surprising how often they seem to go together.

I can only think if you get a copy of your blood test results and post them here then I'm sure you'll get some good advice.

[JOLLYDOLLY]

Dear Skywalker18, I am so sorry to read that you are going through all this. I personally would go to another GP, if you can change Surgery then do so. Gp's know naff all about thyroid issues.

You have all the classic symptoms of underactive thyroid. I would imagine by the heavy periods you are not only anaemic but also B12 deficiency - they walk hand in hand together with thyroid conditions sometimes. You should be having B12 jabs and not supplements.

I was born with the thyroid condition and have the lot, but evidently not anaemic at the moment. However, when I was having periods, they were very very heavy and went on for weeks. Anaemia does that, makes you bleed more as daft as it sounds. Most probably one of the reasons you are so tired as well as the other symtoms.

The amount of sleep you are experiencing, is another indicator of underactive thyroid. I have never heard of anyone having a goitre and not having a thyroid condition.

Having the condition will make it hard to lose weight. It has taken me three months to lose 21lb - someone said to me recently that I should have lost double that for my size, but then they do not walk in our shoes. I am also borderline diabetic.

Get a second opinion my lovely, because that is all it is an opinion, you know your own body. Perhaps take your mum with you as back up. I have a daughter the same age as you and I would go with her.

Let us know how you get on.

Take care x

[Skywalker18 in reply to JOLLYDOLLY]

Hi, thanks you for the reply. Once I had the ultra scan on my neck, the consultant at the hospital diagnosed it as a Large mid-line goitre measuring approx 6 inches in diameter, Scan shows this is a benign multi-nodular goitre. However my GP said, the moment I have surgery to remove this, I will have a underactive thyroid.

The folate, B12, when I went to see my nurse for the diabetes, she told me my diabetes blood test, it went down. As I requested my GP again for a blood test. Because I had a blood test the next day for my diabetes, he added on an extra test as per my request. I have a monthly check up appointment with my nurse regarding my diabetes. She is very nice and kind. She told my my diabetes was going down, so the victoza was helping.

So because of the extra blood test, that is where she read the notes which mentioned my folate and B12. However, I would need to speak to a GP. I am seeing another GP on the 16th August so I will speak to them.

However, my main issue is, none of the GP are truly qualified about the thyroid. I should have seen an endocrinologist, even I get a referral, it could take 3 or more months to see one. It took 6 months to confirm, what I knew, that I had a goitre so no faith there.

That is why I want to go private. Should I do another blood test privately. I just need help, someone who won't blow me off and take my concerns seriously and actually knows what they are talking about.

Does anyone know any endocrinologist, in Luton, Bedfordshire or around it. I don't mind travelling to Bed, Herts ect.

[JOLLYDOLLY in reply to Skywalker18]

The GP can refer you and should refer even if you ask/say you are willing to go privately. I would see the Endo first before doing tests, as they in my experience do their own tests anyway and it would get pricey. But saying that in the private sector they do all the tests, TSH, T4 and T3.

If they did remove the goitre by surgery, then it is likely they would need to remove your thyroid which would mean that you would be on medication for life anyway. We can live without our thyroid gland BUT NOT the hormones it produces.

As the goitre is benign, have they ever said about surgery or treatment to shrink it? I thought they could do that??

I think in the first instance you need to be referred and ask if you can see someone privately. Perhaps, ring Bupa or something like that and ask for a list of Endocrinologists in your area, perhaps google for reviews. May sound daft, but you never know.

All the best and don't be afraid to ask and do not take NO for answer. You have a right to be referred at any cost.

Keep in touch

[Angel_of_the_North]

Even though it sounds awful at your age, get a referral to audiology for free hearing aids. You don't have to use them all the time, just in situations when you need to know what's being said. Hearing loss in the speech ranges is very common.

[Skywalker18 in reply to Angel_of_the_North]

I thought my hearing loss could be associated with the thyroid. While I can hear, sometimes, I have to some people to repeat what they are saying. I don't think I can handle something like that. Not only do I have diabetes, PCOS, most likley thyroid disease. I think I will have to deal with this eventually, I am just scared that I am only 29, I am just getting sicker even though, I do so much to lose wieght. Its one problem to another, I can't even catch a break. None of my family are like me, they are slim, healthy, parents are slim but I am the odd one out. Thank you for the suggestion. I will need to get my hearing checked out soon. I just hoped, this was associated with thyroid, fixing my thyroid, treatment would have resolved this.

[Angel_of_the_North in reply to Skywalker18]

I struggled for years and then got hearing aids. The world is so much noisier than I realized! But I can now talk to people without having to get them to repeat everything. It also saves you from making great social gaffes like saying, "Oh, that's good" when someone says that their dog died and you thought they said it was fine! Well worth it - and you can play the political correctness disability card every time someone is offhand or short with you.

[dtate2016]

Your story is an exact duplicate of mine when I was about your age I am now 61. I live here in the states. I’ve had very good health insurance most of my life I could afford going to the best doctors endocrinologists etc. - my blood tests were similar - and because I cried and was frustrated and endocrinologist prescribed me Xanax and told me to go home and fix my family problems. I had the most wonderful family! and so I cried some more.

I went to the gynecologist and long story short many other doctors who treated each of the many facets of Hashimotos with limited success. I spent two years so depressed that I didn’t know why my husband didn’t have me committed. I lost weight because I couldn’t eat there was no pleasure in it at all .

After 10 years I finally found a Doctor Who sent me to a very different endocrinologist - Who did urine analysis over 10 days and came up with the diagnosis Hashimoto’s. He explained that blood test don’t work many times because the thyroid was functioning but my immune system was killing the thyroid hormone before it can get to the cell(s) - and of course thyroid hormone is utilized by almost every cell in the body.

Again, I could’ve written your story Word for Word.

That was in the late 80s early 90s. The doctor that I found that listened to me - has since come to be known as a functional doctor and he’s getting very old and his practice has so blossomed. He put me on methylated B vitamins most recently - And explain the need for methylated B. It has to do with folic acid - and the genetic inability / predisposition that a third of the population in this world has. He did genetic testing at cost - whatever my insurance would pay which was almost nothing, it cost me zero . I have two copies of the less than optimal MFTHR gene. What that means in real life is that the methylation process, one of the many biological functions of the body doesn’t work like everybody else or like the other 2/3 of the world. It’s very common and for all I know maybe the cause of the Hashimoto’s. Medical doctor still don’t know. I do know that when I take the methylated B vitamins my energy returns with a force! I know also that when I eat right take selenium and other electrolytes, take digestive enzymes and proteolytic enzyme’s that I function like I’m almost not sick. my depression left long ago when I started taking T3 T4 supplements. (Currently NatureThroid - for years before Armour). Heavy periods also cleared right up! I have learned so much here - and you will find your way here - there are many knowledgeable people knowing especially about Hashimoto’s. ( unfortunately there is an explosion and Hashimotos right now) I’ve also learned that the doctor you deal with in the UK are different then the doctors I deal with here. And that’s OK apparently there’s more than one way to beat this thing at least live with it halfway normal, as in happy, productive lives. We have the same trouble with doctors here - they try to ignore the symptoms, want to keep you less than ultimately well so they can milk the insurance - they’ve forgotten “first do no harm”. But there are those few Drs, and we must work hard to find them here in the US, and more more of them being kicked out by the insurance companies so we have to pay cash. For instance testing for vitamin D or running DNA testing well, that’s not approved protocol, approved treatment for Hashimoto’s . Doctors do it anyway because their primary objective is to heal and they get kicked out of the preferred Dr. category. we have to become our own advocates hence resources like Health Unlocked, born out of necessity, are here. It bears repeating we must become our own advocates if we’re going to get well. it’s futile to try to prove anything to the doctors who won’t listen, it’s futile to try to train them or show them test results because we are fighting more than just people more than just doctors, it’s a whole healthcare system that has lost its way -on both sides of the pond. Still, we must have them for we must have prescriptions and there’s no other way to get them. When you get thyroid supplements your brain will clear up and your periods, and many other things. How you can get them is the challenge you must face , You said something about going private and that’s probably the best thing you can do .

The good news is it’s not all in your head and I don’t care what the blood test say they don’t tell the whole story - go to a Doctor Who undestands autoimmunity.

Highly recommend the book: “Dirty Gene’s” by Dr Lynch - explains the methylation process and what we can do at home to clean house (internally) and help our bodies function more normally.

Please excuse the long reply - your story touched my soul it’s like you’re my twin - and I just had to let you know there is hope very much hope! Please post any progress and share with the world how you get out of this dilemma.

[StillEverHopeful]

Oh my you are going through the mill!

You have done so well with your weight loss and reversing diabetes.

My addition to everyone else’s advise mine is to make sure you get a print out of your blood results from the doctors. There are folk here who are really helpful in interpreting them and it will help you feel a bit more equipped.

Hold tight to your faith - you are fearfully and wonderfully made. Listen to those who have traveled your path and come out the other side. X

[dtate2016]

Still thinking about your symptoms and saw this new research on B vitamins, particularly B1: greenmedinfo.com/blog/overl...

My experience with Methylated B vitamins, and particularly B! rings true with this research.

[silverfox7]

As said above post on the PA forum. I did this a couple of months ago as I was wanting to know more about testing and they were very kind and helpful. I felt then I was in a better position to discuss this with my GP.

Hope things work out for you and you will soon see improvements but always remember things can take time and we need to be patient!

[Tile]

Agree with dtate all your health problems point to genetic defect in your MTHFR enzymes. Try to get tested for MTHFR C677 and 12928. Sounds like they already think you have this problem. But you need to take a Bcomplex while taking methylB12 and methylFolate. Too much vit B1 can lower vit B2. So you must be careful if you take extra vit B1. Keep away from folic acid this can build up.and compromise/block.your methylation cycle and lower Natural Killer Cells that get rid of cancer cells if you have MTHFR gene abnormalities.

[LH44]

Have you had your T3 tested? I understand thyroid antibodies can show negative anyway if you've had the problem a long time. I have similar problems to you but cons thinks my hearing loss is due to Vasculitis.

[Portia1974]

Hi Lovely lady

Crikey! So sorry you are going through this.

Everything about your post screams hypothyroidism and iron deficiency to me first and foremost.

Alongside that, b12, folate and Vit D defciency are common bedfellows.

It seems to me your biggest barrier is you Dr which is sadly all too common.

If I were in your shoes, here is what I would do:

1) Get hold of your medical records and read them. Make an official "subject access request (SAR)" to your GP and they will have to provide you with you records within 40 days max. But usually alot quicker. They can no longer charge you for this. Here's the text I used in my letter. Just copy and paste if that helps!

To Whom It May Concern,

Subject Access Request: My own medical records

Please will you provide me with a copy of my complete medical records pursuant of The General Data Protection Regulations and the Data Protection Act 2018 (replacing the Data Protection Act 1998 as of 25 May 2018), & Good Medical Practice 2013.

I require my notes only from (INSERT DATE HERE) to Present day.

I request that these be provided to me within the 40 days as stated within the Data protection Act 2018.

I understand that as of 25th May this year, there will no longer be a fee for providing copies of my notes; unless the request is manifestly unfounded or excessive. Neither of which I believe apply in these circumstances.

I’m afraid I do not have the means to access the online service you provide so as detailed in the legislation,

I’d be grateful if you would ensure that the records are in a format that I can access (printed) & understand as required by paragraphs 21 and 32 of good Medical Practice. This should include expanding all acronyms, including reference ranges and where possible, referencing the guidance or other document that you have based any of your conclusions on and explaining any unusual terms.

Whilst recognising your statutory duty is to comply with this request within 40 days, I would be grateful if you would address this request as soon as is practicable.

2) once you have your results post on here with ranges for advice. Read, read, and read. Knowledge is power. The only way to go into battle with your GP is to show that you know your onions and won't be fobbed off by BS. The only way to recognise BS is to know your stuff before you go in. Sounds like you know quite alot already but this forum is AMAZING for reaffirming what you know already, telling you stuff you didn't realise, and generally being the gang of friends behind you willing you on.

3) if it's possible, explore new GP surgery

4) Tests I would get would be full thyroid testing including antibodies (done fasting first thing in the morning and make sure all future blood tests are done under the same conditions) , full iron panel plus ferritin, b12, active b12, Intrinsic factor and parietal cell antibodies, folate and vit D. If you can stretch to it, (and because your Dr is being obstructive so it would save you at least that battle) you can get kits from Medichecks, Blue horizon etc. I used the Ultravit Woman and the Thyroid kit.

5) Once you are armed with everything, let the battle commence! And everyone here will be here to help you and cheer you on.

Our only option is to become our own experts and advocates. It's hard when you're so exhausted I know. But it's also very empowering. You can do this.