Thyroid UK
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Very concerned about thyroid lab results

I'm sorry if this post is long but I have been having a fight with my GP for a long time.

I was diagnosed with hypo around 15 years ago as I was feeling extremely tired and weak. I suspected hypo as my mother had it. I had also been diagnosed 5 years earlier with severe depression and advised after seeing psychologist to take anti-D's. I am still on them and dose has increased. GP did test my thyroid as asked and I was borderline so prescribed 50mcg to start with a follow up in 12 weeks. results were ok to stay on 50mcg but as I was still feeling tired, GP kindly increased the dose to 75mcg and I have been on this dose up until Jan 2017. unfortunately I do not have test results for this period as I wasn't clued up then. I've never felt wonderful but thought I felt better than I did before taking levo.

I lost my mother very suddenly in May 2016 and having been a very tense and stressed out person all my life due to a dysfunctional upbringing, I started to feel very strange after the initial shock had subsided. I was forgetting everything, couldn't recall names, words or would stop mid sentence and ask myself what I was talking about. I would get very cold mid afternoon and would have to go back to bed. I felt as if my cortisol was raised as the symptoms seemed to fit so GP did a serum cortisol test 6/12/16 which showed 499nmol/l (Range is 133 -537 for serum cortisol). I was concerned but my GP wasn't so I had a salivary test done privately which included Cortisol and DHEA. Basically cortisol was high(off the chart) throughout the 4 readings of the day and DHEA Low. DHEA : Cortisol ratio 0.010 (Range 0.015-0.150) low

What I have only just discovered are the RESULTS of a THYROID TEST taken at the same time as my serum cortisol. This was taken while fasting WATER ONLY

Results 8/12/16 were as follows . TSH 9.03 mU/L ( 0.27-4.20). FT4 18.4 pmol/l (11.00-25)

Surgery rang me to say there was a new prescription for me and I was to increase levo to 100mcg and re-test in 8 weeks.

Results 1/3/17 TSH 0.17 . FT4 21.1 (Range as before)

Results 4/5/17 TSH 0.57 . FT4 18.5 ( " " )

Results 24/8/17 ( I managed to get FT3 tested this time as well)

TSH 1.15. FT4 18.6 FT3 4.2pmol/l ( last time tested 2011 when it was 4.3) (Range 3.10-6.80pmol/l)

Also showing in full blood count were Red Blood cell distribution width which was 16.7% (Range 11.00- 14.80%) This had an asterix by it. B12 deficiency=enlarged red blood cells?

Because of this I asked for folate, ferritin, B12, TG ab and B12 to be tested. I already know TPO is ok. Only some tests were done and the results for these are from

5/9/17 B12 is 311 ng/L (180- 900) Labs commented that B12 deficiency was unlikely but for GP to seek further advice is suggestive features present!!!! She didn't, she said it was fine. i feel this is borderline B12 deficiency from what I can gather from internet.

Serum folate 4.4ug/l (range is >3.8) I take 5mg folic acid a week as I am on 10mg of methatrexate per week for R.A. I also have osteoporosis and take Adcal D3 twice a day (600mg Calcium and 400 IU Colecalciferol which is equivalent to 10 mcg D3(taken from side of box)

Now if you notice the FT4 has around my usual spot when TSH was raised in Dec. 16 and increased slightly when first tested on increased dose of levo in March 2017. I thought Clutter has mentioned that it didn't matter what TSH was doing as long as FT4 was ok, so this is why I am wondering if GP is doing the right thing based on results. She doesn't seem to know much about Thyroid but has referred me to endo in local area who speciality is Diabetes. I have asked to be referred to out of area Endo but he only works with NHS and GP says if we have an endo on our health board I cannot refer you outside of that. Meanwhile I wait for the local one to see me and then if he refers me to the one out of the area(he is allowed) then there will be another waiting list.

I feel awful a lot of the time, constantly tired, cannot get up in the morning, muscle/joint pain which is not from RA, hair thinned out, no pubic/underarm hair left, etc etc. I think I may need RT3 tested to check if this is causing T3 to be low. I know cortisol being high can stop converting of FT4 to FT3. my serum cortisol has since come down to 329n/mol/l as of 5.9.17

The good news is I have managed to source some good T3 50 tables at 20 mg, this was the smallest dose I could get but I am afraid to start taking it because I understand you need to drop around 25% of levo when you do this and my levo tablets are very small 100mcg each. I don't want to ask GP to supply them in 75/25mcg as she has advised me not to dabble with T3 although she did say she can't stop me.

So sorry once again for the essay but I don't know where to turn and feel as if I am getting nowhere with GP who says wait to see local endo..........AND THEN WHAT?!?!

Does anyone think T3 tabs is the right way to proceed. I am so very, very tired and confused.

Thank you all for reading

67 Replies
oldestnewest

I think before you do anything about your thyroid meds, you need to address your low serum B12 and enlarged red cells. These results could indicate pernicious anaemia, an autoimmune disease.

Your GP should test antibodies to gastric parietal cells and antibodies to intrinsic factor, although these tests are far from perfect. You may want to add a couple of private blood tests for a fuller picture: homocysteine and methylmalonic acid. Some would recommend the 'active' B12 test too, but I don't think this is strictly necessary. There are some useful pinned posts you could read on the PA Society's HU forum.

You have a lot of health problems, which is why I suggest looking at each in turn to work out what is actually going on.

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Thank you so much for your very swift reply. P.A is my concern too as i know a bit about it, my M in law died from it aged 60, as it was not treated properly. I will do some more research on this.

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Yes, diagnosis and treatment of PA are possibly even more badly managed than are thyroid conditions.

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Meant to say, post again here on the TUK forum when you've found out a bit more, then we can help you with the thyroid issues. Good luck. :-)

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My mother also had P.A. (I do too) but she died due to the doctor stopping her injections and telling her her B12 was now fine after about 20 years on injections. Little did my sister and I realise that this decision was a disaster with the result that my Mum died of stomach cancer.

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Same as my Mum in law, doctor told her she didn't need injection that month but didn't state that her b12 would always need checking in future. She hated the injections and never went back for more.

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I'm sorry to hear that shaws and ladyabosso too. How were you meant to know ? - there was a time we trusted doctors.

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My sister and I thought that was great that no more injections were required. You would never have thought of a doctor giving you wrong information for common diseases. On this forum we also find this for thyroid gland: ignorance of symptoms etc. In my case that included all doctors, specialists and overnight stay in A&E cardiology (who discharged and diagnosed me with high cholesterol which at one time would have been a red flag).

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Far too many people still are sadly. Since the advent of the internet and the ability to check out any information you want you'd think Doctors would also keep up but it seems they assume what they learn in med. school lasts forever. Disappointing that one has to argue over almost anything because you've read up on it and they haven't.

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A very good point, and its one the General Medical Council needs to look at. Perhaps a petition organised by 38 degrees would be in order, a GP seeking neurological advice in Shropshire would be up a gumtree, there are no NHS neurologists in Shropshire or Staffordshire. So much for the cradle to the grave deal, they have had our dosh, pensioners are now DNR.

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That's awful, shaws . A clear case of clinical negligence, surely?

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The (private) doctor who diagnosed me with a Post Cricoid Web told me I'd choke to death if I didn't have it removed. When I went for my follow-up I said 'what did the barium swallow show then' - there was no response but they never returned any monies. On and on I went becoming more symptomatic. On my 'last legs' I pleaded with my GP that I'd pay for a whole body scan as there was something seriously wrong. He said 'first I will do a thorough blood test as sometimes these private scans aren't all that good. He phoned me at home to tell me that everything was absolutely fine! So - how fine would someone with a TSH of 100 be? Not one ever checked thyroid hormones which you'd think would be more or less routine but I think that's now due to not recognising symptoms.

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Since you were diagnosed as hypo fifteen years ago I would be apt to take the T3. I'd just add a quarter tablet to begin with and take along with your dose of levo. Take pulse/temp before you begin and after a week or two I'd add another 1/4 T3 and so on until you feel your symptoms are improving.

I bet no one tested either Free T4 and Free T3 when you were 'depressed' - so I would think your FT3 was too low which does cause clinical symptoms. Psychiatrists can prescribe T3 for their depressed patients.

Levothyroxine (T4) is inactive and it has to convert to T3 - the only thyroid hormone which is required in our billions of receptor cells. If we cannot convert sufficiently or not being prescribed an optimum of hormones, we will have symptoms and feel bad.

I had constant palps etc on levo and T3 calmed them down completely. I think people have the wrong idea about T3 as it is absorbed quickly into our system and if we are on an optimum dose it's effect of that one dose lasts between one to three days.

web.archive.org/web/2010103...

Your B12, Vit D, iron, ferritin and folate have to be optimal and I will add in SeasideSusie who will comment on your recent results. I don't think you've had all of the above tested but your B12 result is too low and the aim is a B12 of 1,000. Supplement with B12 sublingual B12 methylcobalamin tablets. I find Amazon has the best choice as many pharmacists only stock cyanocobalamin and not many do sublingual.

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you are absoloutely correct Shaws, when diagnosed with depression, GP didn't even think about thyroid! They don't think do they, just write prescriptions.

i feel as if T3 is the right way to go, thank you for your help and advice

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ladyabosso

I ditto Shaws and Reallyfedup123...take control of your health and take the T3...hope you will feel better soon. x

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thank you, I will but first I have to optimize my D3, B12 and folate, calcium like grey goose said.

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I agree take the T3 and if after a while you still fo not improve contact me for reliable supplier of NDT

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Thank you so much Shaws. Yes you are correct, Vit D was not tested because the lab refused to do so, although requested by GP. iron has been tested previously but she said it was fine. Folate was 4.4 (3.8ug/l) and ferritin 28 ug/l (15-300) Both "in range" as she said.

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If you google for "effects of high cortisol on the thyroid" you'll find loads of links on the subject. You'll find that many of them refer to stress. People think of stress as being something that is caused by, for example, a bullying boss or a heavy workload and tight timescales or a difficult relationship with family, or something like that.

But stress can also arise from having low nutrients, eating erratically or not eating enough, or eating too much sugar and junk, or dieting, or taking excessive amounts of exercise, or not sleeping enough, or, or or, the list goes on.

If you think of stress in those terms I've just outlined, it helps to make the links you find less annoying. In many cases referring to stress (in my opinion) comes across as patient blaming and that makes me very angry!

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ladyabosso I haven't read all of your thread so I'll just comment on these as Shaws tagged me.

B12 is 311 ng/L (180- 900)

You can check for signs of deficiency here b12deficiency.info/signs-an... and if you have any you could post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc/posts As taking folic acid can mask signs of deficiency then you should think back to before you started taking it.

If you don't have any signs of deficiency then you can supplement with sublingual methylcobalamin lozenges. I would start with 5000mcg daily and when the bottle is finished change to the 1000mcg dose and maintain your level around 1000.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

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Serum folate 4.4ug/l (range is >3.8) I take 5mg folic acid a week

That's keeping your level where it should be. When taking B12 we should take a B complex to balance the B Vits. A good brand containing methylfolate rather than folic acid is best, and Thorne Basic B is used by many members here.

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Vit D was not tested

I think you should do a private home fingerprick blood spot test to check your Vit D level, you can do that for £28 with City Assays vitamindtest.org.uk/

I also have osteoporosis and take Adcal D3 twice a day (600mg Calcium and 400 IU Colecalciferol

Is the Adcal prescribed? That's 1200mg calcium and only 800iu D3 daily. Is calcium being monitored?

I can't remember, it may have been greygoose or Marz , but I think I've seen something about D3 being more important when we have osteoporosis. Hopefully they may have further information. D3 aids absorption of calcium from food and when taking De we also need K2-MK7 as it directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

We also need magnesium as it helps D3 do it's job. You can check out D3's important cofactors here naturalnews.com/046401_magn...

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ferritin 28 ug/l (15-300) previously

If that was your level previously, if you've not been supplementing I'd hate to think what it is now. You really need it testing.

For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. I would test, even if you have to do it privately. Medichecks do an Iron Status for about £29 I think.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

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hi SeasideSusie , I hope you don't mind if I bring in greygoose at the same time as she has been so helpful to me and I wanted to inform her of the developments too. There have several been developments with my problem.

Firstly I have had some private tests done and my vit D is 61nmol/l (50-200) . active B12 47pmol/l (25.1-165)

Both tested with Medichecks. Guys and St Thomas' Lab, state that active B12 should be a min. of 70 or further testing would be required. However Medichecks range doesn't mention these guidelines.

Armed with this info I went to see one of the GP's at our practice but I had been very short of breath for a week prior. I asked him about the B12 situation and he said, "quite frankly I am more concerned about your shortness of breath today and I don't know a thing about B12....I prefer to be honest!" So cutting a very long story short, I have had chest and heart xrays and a full exam by Gp. He also gave me a weeks supply of penicillin (the horse size) 500mg 3 a day to be on the safe side as he thought he could hear a few crackles in the lungs. Before results were back, I was able to get an appt. with my longstanding GP who knows my full history. Firstly I apologised for my shortness of breath and said I was waiting for results of Xrays. I told him I thought I knew what my problem was and he said "OK,... shoot!" This is the type of relationship we have, more as friends that patient and GP. I then gave him a printed handout from the BMJ on GP guidelines on B12d and informed him that I was aware of the fact that GP's did not get much training on the subject. Next, I produced St Thomas' lab report stating that B12(active) should be min. 70 and he thought I should get tested at THAT lab for activeb12 as their ranges are all different. He tried to tell me that all the tests were "within range" and I told him that both myself and he knew the ranges were a joke. Lots of backward and forward opinions across his desk and I became so upset I started to gather all my papers together to walk out........HOWEVER, my husband, also present, wasn't going to let this happen so he piped up with "What about shortness of breath?" in order to prevent me leaving. The GP said "What shortness of breath?" I said the one I told you about when I came in!!!" So stethoscope out, temp. taken, oxy levels taken on the finger etc, etc. Next thing, without a word he picks up his phone and says simply "ECG!" I was panicking now. He informs me that numbers looked ok but wanted an ECG to make sure. When he called me back in to his office he informed me that xrays were back and all clear and he had decided I was borderline B12d and had decided to give me loading doses x 5 over 2 weeks then 1 x 3 monthly for a year!!??!!?? (Clever eh?) We all know they've been told by the powers that be to stop prescribing B12 jabs.

Well I was flabbergasted but over the moon, as you can imagine and so happy I burst into tears of relief, got up and kissed him! My fight, together with everything I have learned from you on this site was so worth it. Thank you.

However I know I have to get my D levels, as well as folate and I know I need a B complex as well. Now I am very confused about the ones you told me about via amazon as, at the moment I only get 5mg a week of F.Acid and 400iu Vit D3 daily from the practice and I don't want to OD. I know I need METHYL folate as well.

Would one of you be so kind as to let me know EXACTLY THE MAKE, DOSAGE ETC, I should be taking to help this B12 get my thyroid up and working again. On Amazon I get slightly confused because of the way they describe the units. Difficult for me to compare.

I am seeing Rheumy next week and I am waiting on her advice ref. iron (again I don't want to OD) as Hg, Haemocrit lowering, mcv increasing and blood is all over the place according to Gambitt62 on P.A sister site. She thinks I have a mix of abnormal blood cells, some too big and some too small and this was what was confusing the G.P's. It takes a lay person to educate them!

Any help with the supplement dosage and brand will be gratefully received. THANK YOU BOTH VERY MUCH.

WE HAVE LIFT OFF!..........FINALLY! WHAT A PALAVER! Just to make someone healthy again.

LINDA

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Well, for what it's worth, I take Life Extensions BioActive Complete B-Complex, which contains 400 mcg L-5-methyltetrahydrofolate calcium salt. I don't suppose that's the best, and I'm sure Susie has something better up her copious sleeve! But, I thought I'd put that in for the record, as you ask. lol

I bet you just wanted to hit that GP when he said 'it's in range'! :(

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Off to look at Life Extensions BioActive Complete B-Complex.... (not seen that one before).... back in a tick :)

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OK, back now

For me personally (not saying this is everyone's take on it), the amounts of some of the ingredients are quite high, and it contains 60mg calcium which I don't want, 100mg B6 (long term high B6 can cause problems, I prefer to stick to 10mg).

I did very well originally on Thorne Basic B, went over to Metabolics B Complex which was basically the same amounts but in 2 x capsules whereas with Thorne it's 1 x capsule, and Metabolics has no fillers. Unfortunately, Metabolics has now almost doubled in price (£22.50 to £41.59) so my next purchase is going to be Thorne Basic B again.

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Do you know, I hadn't noticed the calcium! Must try harder at reading labels!!! :(

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ladyabosso

However I know I have to get my D levels, as well as folate and I know I need a B complex as well. Now I am very confused about the ones you told me about via amazon as, at the moment I only get 5mg a week of F.Acid and 400iu Vit D3 daily from the practice and I don't want to OD. I know I need METHYL folate as well.

What supplements are you wanting suggestions for?

Would one of you be so kind as to let me know EXACTLY THE MAKE, DOSAGE ETC, I should be taking to help this B12 get my thyroid up and working again. On Amazon I get slightly confused because of the way they describe the units. Difficult for me to compare.

I think as you are having B12 injections at the moment then you should probably not supplement with anything else just yet. 5 loading doses over 2 weeks will give your level a boost, then the next one will be 3 months later. I think you should see how you feel in between, if you start to flag then you'll know you need some kind of top up between your 3 monthly injections, and the best people to advise on that are on the PA forum.

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Thank you both SeasideSusie and greygoose xx

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You're welcome. :)

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Wow SeasideSusie, all this sounds really worrying. BTW the ferritin result was from 5th sep 2017, it was the iron Gp tested previously (or is that the same as ferritin)? This is a lot for me to take in all at once but I will get everything tested privately as you suggest. How does NHS get away with these so called "ranges"? Many tanks for your reply.

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ladyabosso, if you want to reply to someone, you need to click on the 'reply' button at the bottom of their post, otherwise, they will not know you have replied.

What worries me the most in all this - although it's a ghastly and you've been terribly neglected - is the whole osteoporosis thing. Just shoving calcium tablets at you is not going to help and could make things worse. And it is utterly rediculous that they refused to test vit D in someone with osteoporosis! Do they at least keep a close eye on your calcium levels? Because they could be through the roof!

Susie has explained about vit D3 increasing absorption of calcium from food, but you would need to be on a decent dose of D3 first. If the NHS lab won't test it, then I really think it's important you get it tested privately, so that you know how much to take. Too much is toxic.

What is more important for bones than calcium, is magnesium. And we're all short of magnesium because the soils are depleted. So, I would recommend taking that. You can take up to 450 mg, but start low and work up, because it can affect your gut.

Are they keeping an eye on your osteoporosis? Regular check ups? You're not on statins, by any chance, are you? Just asking. :)

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Thank you for your advice greygoose, I was put on statins 40mg, around 2 years ago but I have taken myself off in the last 2 weeks as I read they can contribute to muscle pain. It was my good cholesterol that was high anyway HDL not the LDL.

My rheumatologist, who I am supposed to see only twice a year, checks on my osteoporosis as she was the one who initiated the bone density scan in the first place, probably due to viewing height loss (3 inches in total). I am seeing her again in October but sometimes I just get to see her Rheumatologist nurse. I would like to see the consultant herself this time as I have so many questions about all these problems.

I put myself on 400mg ( split into twice a day about 12months ago as I suffer from restless legs very badly (another symptom of B12 deficiency) Calcium levels have NEVER BEEN checked. At our practice, it is a very large one, they do not see the patient as a whole, they just ask what can we do for you today. When I think about everything health wise, that has happened to me over the years, I start to feel very, very angry that these things have all been neglected. I am not backwards in coming forwards as they say and I come over as a very confident person but when I took it into my own hands and had my salivary cortisol tested I was made to feel that I had been diagnosing myself incorrectly. I would like to get my RT3 checked but as I live in the sticks in West Wales i do not know how to go about getting my blood drawn. There is a Spire hospital not too far away that I could try, I believe someone has mentioned they will do it for a fee.

I have lost all confidence in my Gp's at the surgery and all the so called endos that know nothing about the thyroid.

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Interesting about the statins... Do you know that high cholesterol is a symptom of low T3? Your cholesterol will go down as your T3 comes up.

But, there's no such thing as good and bad cholesterol. It's all just a huge great con so that Big Pharma can make a fortune out of statins, to the detriment of our health! I would recommend you read Dr Malcolm Hendrix's book The Great Cholesterol Con.

Anyway, that probably means your vit D is low, so you need to get it tested. As well as your calcium. That is outrageous that they put on calcium supplements without ever testing your calcium? They ought to be shot! You could end up with a heart attack or kidney stones or something. You should not be taking that calcium.

Forget rT3. It is the least of your worries at this point. It's very expensive to test, and even if you find it's high, what are you going to do about it? And it is going to be high because your FT4 is too high compared to your T3. But, it's not the rT3 causing your low T3, it is your conversion problem causing the high rT3. Lower your levo, add in some T3, and the rT3 will gradually go away. But, the problem always is getting the T3!

But, if you want private testing, look on the ThyroidUK main page, and you'll find all the details. I believe you can get blood taken at Spire hospitals for Blue Horizon tests, or else there are finger prick tests.

So what did you put yourself on 400 mg of? Magnesium? Or B12? Restless leg can be caused by many things - low magnesium, low B12, low iron, low T3... They all need to be optimal.

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Magnesium. 400mg daily split into 2.

Thank you so much GG I think I have been obsessing about RT3 and that is now a weight off my mind that I don't need that tested atm. I am going to get the rest of these tests sorted out. Should I wait until all vits and minerals are optimum before starting the T3?

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Perhaps you don't need to wait quite until they're optimal, but certainly not dragging on the ground! :)

Do let us know when you get them tested, I'll be interested to see the results.

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I will be on it next week and yes I will inform you of any news GG, once again, thank you so much

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You're very welcome. :)

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Hi GG, I have stopped the calcium altogether and GP has given me D3 only but not enough in my opinion although I've been privately tested and Vit D is 61 (50-200 nmol/L) Active B12 tested privately is 47 (25.1-165 pmol/l) Medichecks said all normal. I intend getting the B12 supplement you recommended and topping up with Vit D3. Do you think it may be time now to start the T3 I have already purchased, or should I try to raise my vitamin levels first?

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What did he give you? 800 iu? That's what they usually give, they have no idea!

Given that you only started supplementing 20 odd days ago - if that - you really won't have raised levels much at all. Try taking the T3, but if you have trouble raising it, hold it at the starting dose until nutrients are better. :)

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Thank u for your response, Gp gave me.....tah dah....400iu! Even the leaflet said one or 2 a day, I got one only! I have discovered that Gp's now get rewarded for reducing prescriptions! Should I stay on the usual 100mg levo for now as well?

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Oh, definitely stay on the 100 mcg levo. But buy your own vit D3!

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I will and the methylcobalamin ?spelling? B12 from amazon that was recommended. I also had PA antibodies tested and I was all clear. Got to be a conversion T4/T3problem due to low d3 and b12. Thank you so, so much.

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Don't start them both at the same time. Leave about two weeks between starting each one. :)

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I have been on d3 for yrs and would b just increasing dose of those so would i still wait till after 2 weeks of increased dose of this b4 starting b12 methylcob sublingual ?

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Either that, or start the B12 and increase the vit D two weeks later.

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Ok thank you again.

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You're welcome. :)

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ladyabosso I live in rural north-west Wales and my nearest Spire is a 120 mile round trip (as is the nearest NHS hospital but they won't do private blood draw even when you offer to pay, only if your GP requests it), and my surgery wont do a blood draw for me. When I wanted my rT3 checked I used Blue Horizon and their home phlebotomy service. You order the kit, they send it to your home and contact the phlebotomy service with your details. A nurse rings you to arrange a convenient time to come to your house. It costs £49.

If you want full thyroid tests, rT3 plus vitamins and minerals then this is the test bluehorizonmedicals.co.uk/t...

If you don't want thyroid antibodies or vitamins and minerals then this one is cheaper bluehorizonmedicals.co.uk/m...

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Thank you so, sooooo much for all your advice. I'm on it on Monday.

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Hi Greygoose

Am hypothyroidism on 100mcg daily, however, I believe the fillers were increasing my blood pressure , doctor put me on Enalapril, couldn't cope with 5mg daily, then 2.5mg daily then put myself on 1.25mg once a week. Always monitoring my own BP.

Always looking for a way out of taking pills. Four weeks ago I started with organic Spirolina, took for two days (1 tspn daily) then cut my Levothyroxin dramatically in half (50mcg) supplementing with daily powder Spiraling in water. Feeling fantastic, BP now normal daily. Am in touch with a brilliant Pharmacist. Will look at getting private TSH/T4/T3 test in 6 weeks time to check.

Just feel it is such a breakthrough.

Would be interested in your opinion.

Thks.

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I don't think you really want to hear my opinion!

The only thing that can replace thyroid hormones is thyroid hormones. Not vitamins or seaweed.

There are two reasons you feel fantastic at the moment :

1) because you've stopped levo, and it's a well-known fact that when people first stop taking their levo, they feel fantastic for a while - nobody knows why - but it doesn't last. Sooner or later, the hypo symptoms start creeping back in and you get worse and worse.

2) Spirulina is high in iodine. The iodine will be stimulating your thyroid to make more thyroid hormone. But, the worst thing you can do to a sick gland, is stimulate it. It just burns out faster. Excess iodine can also have a lot of other side effects, like cancer.

I know it's a drag to have to take pills every day - well, so they say, it doesn't bother me too much, and I prefer it to the alternative! You cannot avoid it. You need to replace those thyroid hormones if you want to live. And, that's all I'm going to say.

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Actually, I should have added that it's perfectly possible that the fillers in your levo are causing your high blood pressure - although high blood pressure is also a low thyroid symptom, so you're probably under-medicated. But, if the fillers in the brand you're taking don't agree with you, ask your pharmacist to change the brand. There are quite a few around.

Or, get yourself some NDT and try that. Anything is better than stopping thyroid hormone altogether. You cannot replace thyroid hormone with iodine. It doesn't work like that. :)

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Sorry to add another complication, but you really need to know if you have high thyroid antibodies. If you do this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

If you have Hashimoto's then changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/why-changi...

If you can't get full thyroid and vitamin testing from GP

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

I would also ask GP to test calcium or test privately

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

Interesting article about calcium, magnesium and vitamin D

naturopathconnect.com/artic...

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TPO is fine, they won't test TG ab at our lab but I did ask for this test after reading all the advice from this wonderful site

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Private tests would test both

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B12 is low - you can be symptomatic under 500 and the symptoms are very similar to hypothyroidism. I think you should look at that first. I'm not sure, but enlarged blood cells can be a sign of pa can't they? (Don't take my word on that, look it up for yourself or ask the healthunlocked pernicious anaemia forum). I don't have pa but b12 was slightly lower than yours at 282 (I think) my gp wouldn't give me injections either. I self inject now with methylcoblamin which I got from a charity. If you can, get the methylcoblamin injections, they will make a world of difference. As your last results didn't look too bad I would try to get the b12 sorted before anything else as not only will it help your symptoms but also your pick up of the thyroid medication.

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Words fail me when I read of such bad care but lots of boxes now ticked above. You are t converting the T4 efficiently into the much needed T3 which every cell needs to make us well. Addressing D3, Folate, ferritin and B12 will address this but it takes time but it works or rather it worked for me. Once you add T3 into the mix then you can't tell for. Onverstion as the results are read differently and only the FT3 is reliable so you are unable to compare with FT4 as that will from lower in the range and TSH will be suppressed which worries ignorant doctors! But FT3 needs to be high in the range. So you can either add in some T3 now or wait to see the effect of the improved doses and see if that works for you. It either way you need to supplement as suggested and hopefully that will improve things for you So glad you have taken yourself of statins. And I hope given the pointers in the right direction then things start to improve for you.

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I have hashimotos. On 100mcg levothyroxine which I take on an empty tummy with vit c. Then later in the day vit d, vit b12 sublingual and folic acid. I have never felt so good since 15 years if this illness. I found out the info on here and started my own regime. I don't even see my gp or rheumatologist anymore.

Doctors are so dismissive of us. I am totally with you. They make us feel like idiots. They have no idea. Going privately was the only way I got anywhere. But help for our health problems should be available on Nhs. We are let down badly.

Big hug and best wishes.

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I think you need your B12 checked as that makes you really unwell if not right. Emune system. Achs and pains specially in your joints and muscles.

I have the B12 injection evety 3 months and 100mg Levothyroxin. It works for me. I also take Vitamin D as a top up. Before i had thyroid problems i had been a healthy child and teenager. Now i have so much health issues from Depression to Anxiety.

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Just a wee comment. Red cell distribution width is a measure of the difference in size if your red cells, really need to know the Mean Cell Volume (MCV). That tells you if your red cells are small, large or within normal limits and might help with diagnosis of iron deficiency or B12/Foliate deficiency. Hope this helps .

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Red cell distribution width is a measure of the range of sizes of your red blood cells. One of the most important things it does is to highlight when the mean cell volume is quite possibly acceptable but that is because of concurrent macrocytosis and microcytosis. That is, some cells large (probably due to low B12), other cells small (possibly due to iron deficiency), but the average (mean) appearing "normal".

MCV on its own can mislead and suggest all is well.

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Yes, thank you, I have looked up the details of mcv, they are 91fL (80-100), so I am mid range.

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Quite so Helvella.

As so many say on this sight you need the whole picture

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This pretty much summed me up a while ago and no alarm bells went off and I naively never challenged the receptionist when I phoned them up and they'd say, "Oh we didn't bother calling because they've come back 'normal'". ! I'm amazed that some GPs ever got through their exams.

The NHS and NICE is just making a massive assumption that all GPs - who can be experts on anatomy and general human biology are also born naturals at analysing data. I've worked with people who are wildly intelligent at this stuff that make GPs look like total primitives. There is a massive lack of skill in this area that is costing us dearly.

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Hi you sound just like how I feel. I don't understand all this T3 T4 and serum cortsiol. You seem up to date with the ins and outs. Strange u mention hair loss. Under my arm no hair and leg very little. Never even thought about my underactive thyroid doing all this. My depression is bad and forgetting appointments turning up at wrong times. Talking then in mid stream no re call what I was saying or talking about 😒. Think I need to look into it more and back to doctors! Like most docs have no idea. Even though for months my thyroid was being checked was ok. Then due to problems with my ear and neck. Was going to take 9 months to see neurologist. My mum paid for MRI for head and neck. Showing probs with enlarged thyroid and 2 slipped discs. Then paid to see neurologist seeing him within a few days skipping que by 4 months. I can kick myself at the time with thyroid could have see someone else but I never that was 4 years ago! So might ask doc to send me know. Let us know what u decide to do. Watch this space x

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Hi, also please note that taking folic acid can also mask the b12 deficiency further. 'Taking synthetic folic acid alone can mask symptoms of B12 deficiency, as folic acid can cause the blood cells affected by B12 deficiency to return to normal.' taken from extract below...

anhinternational.org/2013/0...

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very good link, thank you

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It's pretty terrifying quite how bad this problem is and certainly makes you wonder about not just those of us with autoimmune thyroid, but a whole lot of other conditions / lifestyles that may mean people of all ages can be struggling to absorb b12 properly.

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