Started metformin

[TreorchyGal]

Should this join together with my thyroxine and give a good weight loss??? Can't tolerate fatty food already, only started it yesterday!!! The metformin has been prescribed to suppress my appetite and sort my hormones out. I'm not diabetic!!

[Hennerton]

It sounds a bit drastic to put you on a diabetic drug, when you are not diabetic. Are you sure it is a good idea to mess with your hormones in this way? What is supposed to be wrong with your hormones? Sorry to be negative about this and I wonder if you are on the correct dose of Thyroxine. If you have copies of latest blood tests, perhaps you could post them here for comments and advice. Do include the reference ranges as they vary between labs. If you could have the correct dose, and even maybe the addition of T3, it would probably sort out any weight issues you have.

[TreorchyGal]

I don't get copies of my blood results. I'm on the metformin as it is known to help with fertility issues hence the hormone side of it. I'm still having my levels checked at the moment with my thyroxine

[ThyroidThora in reply to TreorchyGal]

Who told you that Metformin helps with fertility? Metformin is prescribed to pregnant mothers who are at risk of having large babies due to problems with blood sugar or are already overweight. It's to prevent the baby growing too big and there being complications during labour. Have you got Polycistic Ovary Syndrome (PCOS)? Metformin can be used to stimulate the ovaries to release eggs to aid fertility if you have PCOS but if you haven't then I'd think twice about this drug.

[Hidden]

Did the doctor prescribe this? You need to be mindful that this drug can lead to vitamin B12 deficiency which, like thyroid disease, is linked to fertility problems. Also, your B12 levels are liable to be low already if you have a thyroid condition. Have you had the usual vits and mins tested? (B12, folate, ferritin, vit D)

[TreorchyGal in reply to Hidden]

As I'm on the metformin I have read the leaflet about b12 and it interacts with it if I take a supplement of it. I assume they are done when I have my bloods done x

[Hidden in reply to TreorchyGal]

Hi TreorchyGal, I was prescribed metformin for 2 years "to help my weight" it was really irresponsible of my doctor to do this I now know. I had already been told by my dermatologist I had low B12, I was already on an acid lowering drug for a bladder disease and all in all it was a recipe for disaster. I was prescribed cyanocobalamin at 50mcg for 10 years when I should have been on B12 injections. Now I have nerve damage in my lower legs and feet, and it's very painful. At the time I had no idea of the connection between the B12 and metformin,, now for me it's probably too late. Unless you have diabetes I would question taking this drug.

[dwsmith in reply to Hidden]

Hi Helcaster do you mind me asking how low your B12 was?

[Hidden in reply to dwsmith]

Hi dwsmith, that's a good question, I wasn't told and I didn't ask in those days, I think if anyone in the NHS said it was "low" it must have been horribly low. In October last year it was 405, I was still supplementing at this point. Since joining the forum I realised I had a big problem with B12, beefy tongue, nerve pain, exhaustion, breathlessness, etc etc. I just thought it was my thyroid, I could only walk to the next bench. My foot pain came on in 2007, I was sent for acupuncture, my calves and lower legs have been tight, burning and restless since 2005. Still hoping to feel some improvement, but realistically I think it may be too late. I'd like to point out that I've also been hypo for a very long time without diagnosis until recently.

When my B12 was done in October after reading posts on here I was supplementing 5,000 MCG sublingual a day. I had my folate tested then too, and that had halved in just over a year to 7.5 which is too low. Also having a battle with iron, as the body pinches more iron when B12 is low

I eat all foods with iron, b12 and folate but I have low stomach acid.

[dwsmith in reply to Hidden]

Thankyou Helcaster, I'm very interested cos my daughter is very similar, her B12 is 305 and her Ferritin is 18, her Dr isn't referring her or treating her, so i will have to look at taking her private , she was also diagnosed hypo by Dr Skinner 2 years ago Her Dr thinks she's fine cos she's in range…..?

[Hidden in reply to dwsmith]

Hi dwsmith, has she had her cholesterol tested? It's usually raised with hypothyroidism. Mine went from very low to 7.7, this also helped to clinch my diagnosis. My TSH only went up to 5, but my FT4 was 13, and my FT3 was 2.2 so my doctor agreed these figures weren't normal. Levo didn't help me for two years, I found Armour to have the most effect with swelling, heart palps etc.

The B12 serum test consists of the active and non active B12, so there could be very little B12 entering her cells, the ferritin is much too low, it should be around 80. Did she have her folate tested?

Does she eat a lot of animal products for B12 and iron? If she does, it could be the hypo making her low. I'd get her on methylfolate @ 5,000 MCG a day, sublingual is said to be absorbed better. There may be signs of anaemia if you insist she has a full blood count done. If her folate is low supplementing with methyl folate should help. Drs can prescribe 5mg of folic acid for around 4 months to get levels up. All these things should be in the top 25% for your body to function correctly.

I self medicate with Armour, if the doctor won't play ball, your daughter may have to do this.

[dwsmith in reply to Hidden]

Hi Helcaster, no i don't think she's ever had her Cholesterol checked, her folate actually went up from 3.6 to 6.8 so thats good isn't it? Yes her Ferritin and B12 are way too low, i just feel that i need a DR to take control of her and not me, but so far her old Dr and now her new Dr are not very interested in these levels., i think i will try to get her an appointment with Dr Kevin Spithoff in London, if we get no joy there, then self medicate is the answer, thank you for your advice x

[Hidden in reply to dwsmith]

Hi dwsmith, that folate is way too low. B12 and folate work together, along with the other b vits. Mine went down and it's 7.5 and I'm supplementing at high doses.

Good luck with finding a doctor who understands all this. Dr Chandy is very good re B12 etc, but I have a feeling he's up North somewhere. I think you can email him though?

There's a very good Facebook page for Pernicious Anaemia/B12 deficiency, one of the Admins is Pat Kornic. I go on there a lot and they are very knowledgeable and helpful. I also think there's a list of helpful Drs too.

[ukangell in reply to Hidden]

i'm a member of this group and they're really great with advice.

i was put on metformin for pcos i had the glucose tolerance test and i needed to be on metformin. i knew nothing at the time about the damage to B12. i stopped taking it when i got pregnant with my daughter in 2006. at that point i'd been taking it for 6 years. i've always been anaemic on and off and last year i was ill. i'm a runner (or was as i'm too ill to run now) and felt the usual breathlessness which is my indication my iron was low again. i'd changed drs and she did my B12 too. she called me in and i started on tablets. my level was 157. after 3 months the tablets had done very little to my levels. they'd gone up to 163. i asked for injections. i found a fab dr, dr chandy who i managed to get a referal too and he asked for my cortisol level to be tested. B12+low cortisol go hand in hand. it was very low but still, by the skin of it's teeth, within the normal range. now i learn the pcos and adrenal problems are linked too. (CAH).

i've basically been abandoned by the drs as they won't give me more frequent B12 injections, they won't prescribe hydrocortisone tablets but they will give me more metformin.

i'm 5 stone overweight now. i can't run as i almost pass out and get frequent dizzy spells. i'm also way to tired to be bothered to do anything anymore and just want to sleep all the time.

totally fed up.

[ukangell in reply to ukangell]

i've also got stomach problems. i've been kind of hiding most of the symptoms for at least 10 years as i didn't want a camera down or up.

metformin upsets my tum but i get the runs and then constipation then i bleed.

it's got so bad i took myself off to the drs. now i'm getting the one thing i didn't want. a camera up!

just hoping that something comes of it and they find a route cause to all my problems and solve it one fell swoop. however, this is the NHS we're talking about!

[Hidden in reply to ukangell]

Hi ukangell, your story is so similar to mine. I was put on tablets instead of injections, my cortisol is low. I know Dr Chandy links these two together. Unfortunately my GP isn't giving me enough injections, two a week instead of every other day. You can buy needles syringes very easily, you can get generic B12 online, and I'm afraid that's what a lot of people are having to do. Dr Chandy also sells the methyl B12 ready mixed. If you go on the Facebook page I suggested in the files is where to buy everything from. I just bought 100 syringes, 100 drawing up needles and 100 injecting needles, and 100 alcohol wipes for £18 including packaging. The methyl is about £25 for 30 injections, if you get the generic hydro I think it's cheaper.

I had diarrhoea since 1999, it is definitely linked with low B12 in my case. I would get a few seconds notice start sweating, painful spasms and then really foul smelling exploding watery poo. That seems to be happening less now on B12, but too late for my rectum as it's now prolapsed and I have non stop anal fissures.

I learnt a long time ago doctors don't know everything, they can harm you, and you have to be proactive. I fund my thyroid meds too, and take whatever dose I feel is necessary. I've opted out so to speak, like so many of us.

I have problems with fainting too, is it anaemia is it low cortisol?. My GP ignored this, also double vision and a big lump in my neck, tell me what do they do for their 100plus K salary?

Since treating my thyroid and B12 I've lost the first 2 stones of the 5 stones I have put on, it's taken me 16 months though! Cutting sugar and carbs has helped me. I'm not yet gluten free but I've stopped eating bread, I have gluten free rice cakes instead, more pounds lost too.

Re hydrocortisone, that's not too expensive to buy online.

I have to say I don't agree with having to resort to treating yourself, I can't afford it and it makes me angry, but feel sometimes there's no choice.

Good luck.

[ukangell in reply to Hidden]

i'm self injecting every week. my drs won't listen to the need to give me monthly B12 shots.

[Hidden in reply to ukangell]

Did you have your full loading doses to begin with? Do you have problems with your nerves? You've read the NICE guidelines? I took these in to my GP but still didn't get the every other day injection that I should be getting. You're buying your B12 already?

I do think low cortisol affects your gut too. I don't know what the answer is ukangell, I'm thinking I'll need to buy HC myself. My thyroid meds are just not working as they should. I'm wondering too if low cortisol affects your body's use of the B12? I've been having injections since last Christmas and just not feeling better. I have severe nerve pain in my feet and lower legs. Do you get this?

I'm going to email Dr Chandy and hopefully get some advice and buy some methyl. I think we're all in the same boat where treatment is concerned, and it stinks!!

[ukangell in reply to Hidden]

I've been buying it for 9 months from Germany. I got my loading doses and initially felt quite good but 3 months too long to wait. Even though I do it weekly I still feel tired which is why I was glad when I found out my cortisol was low and I needed HC. I suffer with forgetting words, my fingers tingle loads some days and not on others. I'm tired all the time and don't make it past 9pm most nights. I have a very stiff and sore lower back and hips and can't sleep the night through. I also crazy though it is get insomnia too. On HC my back and hips stop hurting, I didn't notice any tingling in my fingers but can't remember well enough to say that it didn't happen.

[Hidden in reply to ukangell]

Ukangell, Really glad you're self medicating, 3 months is a ridiculously long time to wait. I know people on the B12 site having to inject every day.

You're the tiredness never goes, I have awful hip pain too and it's really affected my mobility. I get breathless and my heart pounds at the slightest exertion, then I faint. It's really unpleasant, just washing my hair can make me faint. I thought if I was going to improve on B12 it should be happening by now!

Think both of us know the lack of cortisol is screwing everything up. I have told and shown my GP adrenal stress profile results and doctors just don't seem to know how to treat it. I had steroid injections into painful joints for over 6 years, my GP agreed it would have really knocked my thyroid function, but did nothing!

My insomnia started in 1993, I don't sleep until 3 am, but I do think it's improved slightly with B12. I have a bladder disease so I'm up at least 3 times a night to the loo, this does nothing for your sleep hygiene, I would do anything to sleep through the night!

I get very shaky under the slightest stress, my legs especially really tremble. I can get exhausted by a conversation, or an email. People who are well just don't understand this kind of exhaustion.

Did you keep up the HC? I'm keen to try it now nothing else has worked.

[Hidden in reply to TreorchyGal]

Never assume anything, ask to get the above tests done, and get copies of all your results. x

[ThyroidThora in reply to TreorchyGal]

Metformin causes vitamin B12 deficiency and this is irreversible. Once you have problems with this you need to have Vit B12 injections for the rest of your life.

[helen0701]

Neither metformin or levo will make you lose weight unless you are eating a healthy diet with regular exercise

[ThyroidThora]

Hi TreorchyGal,

Metformin is not an appetite suppressant at all. I'm a diabetic that was told that it would suppress my appetite to help me lose weight and get my blood sugars down. It will not sort your hormones out nor suppress your appetite. It works best if you follow a very low carbohydrate diet and cut out all refined carbohydrates such as bread, potatoes, pasta and limit your consumption of starchy vegetables and be careful with other sugary foods. This means not eating cakes, chocolates, sweets, fruit juice, sugary drinks and starchy/sugary fruits such as bananas. The drug works on the kidneys and prevents sugar in the urine being peed out but transported into the muscles where it belongs. Unfortunately, the main side effect of Metformin is kidney failure.

I also take Levothyroxine and now T3 because I was diagnosed with thyroid cancer a year ago when a calcified nodule was removed along with the right ride of my thyroid gland. I was told that I had had the cancer for at least 4 years, the same time I was diagnosed diabetic, and now I've got hold of my medical records it would appear that I was mildly hypothyroid since the birth of my daughter 22 years ago when I was told that my hormones were out of balance but not bad enough to treat. This probably caused the cancer and hence diabetes because everything was out of balance and cancer needs insulin to grow, I was insulin resistant.

As regards your Metformin and Levo working together to provide weight loss, I have my doubts. I was always overweight following my daughter's birth and I struggled to lose weight. When diagnosed diabetic I couldn't believe this because I'd always followed a low fat healthy diet due to having a gall stone. I didn't eat refined foods (cakes etc) to excess, just the occasional treat, and I couldn't lose weight below 12stone. No wonder I was mildly hypothyroid! Then when I followed a no carb diet with the Metformin I lost a stone in weight and went down to 10st 10lb. As soon as my right thyroid lobe was removed I put the weight back on within 4 weeks. I've been on the Levo for nearly a year now with my dose increasing every 2 months until I've been on 125mcg and 150mcg on alternate days. My weight has not gone down and my symptoms have not improved so my endo has now started me on T3 of 10mcg and 100mcg of Levo. I started this regime last Thursday and I still feel like s**t. Also, synthetic T4 and T3 causes raised blood sugar (worsens diabetes) and hence weight gain. T3 sometimes causes weight loss.

I hope this information is of some help and not too confusing. Please PM me if you need some more help and if you're not diabetic I'd think twice about Metformin due to the side effects. Have you investigated your diet? You might have a gluten intolerance and this causes weight gain.

Good luck x.

[Hidden]

Who prescribed the metformin? Any fertility issues are much more likely to be sorted out if your thyroid and adrenal levels are optimised.

Your doctor must give you a copy of your test results. Please ask him for a copy and post the results here along with reference ranges from the tests.

Jane x

[TreorchyGal in reply to Hidden]

My gynaecologist prescribed it for me. I don't have my bloods done through the GP I go to my cancer hospital

[TreorchyGal]

I have had coeliac tests, gluten test, milk tolerance tests. I'm on Slimming world and seems to be coming off slowly. Should I go back to my doc and ask for an alternative diet plan.

I will be gutted if I have to cut out bread, pasta, potatoes and especially bananas

I'm also on bromocriptine which I have to take at night due to sickness

and nausea.

List of tablets

Levo 150mcg every other day then 175mcg on the other days

Omeprazole 1 tablet a day 20mg

Metformin 1 500mg tablet twice a day

2 calcium and vit d tablets 4 hours after Levo

Bromocriptine 1 tablet at night

[Hidden in reply to TreorchyGal]

Are you pregnant, TG? Is that why you've been prescribed this stuff?

[TreorchyGal in reply to Hidden]

No not pregnant, trying to get pregnant though

[Amandajl]

Hi I was prescribe Metromin for PCOS and I lost 6 stone it's stopped my moods swings are regulated my periods every 28 days never had that before I went months without one . I am in my late 40's and still fertile.

I personally can say metformin has worked wonders for me and I don.t have aproblem with B12, it takes a while for your body to get use to metformin and can cause upset tummys it also can take up to 6 months to get the level sorted in your blood before weight starts to go. A diet long side helps I stopped eating bread and pasta and stuck to mainly meant fruit and veg.

[beaton]

Got back to your GP and ask for more help with diet. You should be trying to reduce medication not increase it.xx

[mountaingoat83]

My doctor has offered me metformin for PCOS, although I am not overweight and I don't seem to be insulin resistant. I was sceptical, but he thinks it would work for me and I do trust him (I haven't had any periods since coming off the pill 14 months ago). I have decided to try a different route first though and I am seeing a naturopath who is treating me with various supplements, and some dietary changes to ensure my blood sugar levels stay stable and to try to reduce inflammation. I haven't given up anything apart from cow's milk, but I have cut down on sugar, and only have one wheaty food a day. Another thing is to always make sure you have some protein with meals and snacks, which keeps you fuller and balances carbs to prevent spikes in blood sugar. Hope that helps a bit x

[Angel_of_the_North]

Metformin is supposed to help with "metabolic syndrome" (and also some types of cancer). See lef.org/magazine/mag2010/no...

Chris Kresser also did a podacst on it - try searching the web. It lowers TSH, but whether than means that the TSH gets lower as the T4 and T3 get higher, or because the pituitory just starts igoring the screams for help, I don't know.

wildlyfluctuating.blogspot....

BUT there is evidence that is can lower B12, so be careful.

bmj.com/content/340/bmj.c2181