Hi I am new do I have Hashimotos I have thyroid peroxidase antibodies of 228 (<34) and thyroglobulin antibodies of 369.5 (<115)
Ferritin 6 (15 - 150) taking 3 ferrous fumarate a day since 2014
Folate 2.2 (2.5 - 19.5) taking 5mg folic acid once a day since 2016
Vitamin B12 201 (190 - 900)
Vitamin D 23.6
(<25 severe
25 - 50 deficient
50 - 75 suboptimal
>75 adequate) taking 800iu vitamin D once a day since 2014
Thankyou
Hashimoto's is associated with raised antibodies and you have them. Do you have the results of any other blood work to share (along with their reference ranges)?
Thankyou I have thyroid results below
TSH 11.4 (0.27 - 4.20)
Free T4 9.5 (12 - 22)
Free T3 3.3 (3.1 - 6.8)
Not on any thyroid medication yet
To state the obvious, your TSH is high above the range and above the 'magic' number of 10 that so many GPs need to see before confirming a diagnosis of hypothyroidism.
Your FT4 is below the reference range and your FT3 is just inside the reference range.
I'm assuming that you have an appointment with your GP? Are these NHS tests or private ones? If private ones, your GP may want to repeat them - and, if so, fast overnight, and have the earliest appointment possible for the blood test.
If these are NHS tests or your GP is willing to accept your private results, then you will probably be prescribed levothyroxine at a relatively low dose of 50mcg if there are no reasons to start you lower. You should be tested again in 6-8 weeks and the dose will probably need to be increased until you achieve a level at which you feel better and your blood work is in appropriate ranges.
For levo. therapy, the aim is to move patients to a euthyroid state. For most patients, this means that you will have a TSH < 1 and the T4 and T3 will move towards the upper part of their reference ranges.
Did you have vitamin and mineral level tests? E.g., ferritin, folate, vitamins B12 and D tested? If so, please post them along with their reference ranges as it's common for Hashimoto's to be arm in arm with poor gut absorption and these levels can all drop.
Vitamins and minerals need to be in optimal ranges to make effective use of thyroid hormones, whether our own or supplemented ones like Levothyroxine.
If you haven't had these tested, please request them from your GP when you have your appointment and post the results for comment from people like SeasideSusie . I know that SlowDragon has some helpful advice on how to eat to reduce your antibodies with Hashimoto's.
Good Luck!
Thankyou they are NHS results and GP is not prescribing me any levo. No appointment given.
I would make an appointment to discuss those results in your position as you need to start treatment.
GP says I don't need levo.
Why does your GP say that you don't need levo with such results? Your TSH has surpassed the 'magic' number 10 at which even the current guidelines state that patients need thyroid hormone replacement. Many people's TSH never rises so high, and yet they become severely hypothyroid.
Thankyou GP says because I have hyperthyroid symptoms that means I don't need it. I don't know why he would say that.
If your heart is playing up it wont be due to 'too much hormones' (i.e. hyperthyroidism) but because you don't have sufficient thyroid hormones to enable your heart to work normally. You have an Autoimmune Thyroid Disease called Hashimoto's due to thyroid antibodies but treatment is the same as hypothyroidism. Your 'hyper' symptoms are when the antibodies attack your thyroid gland.
Is it possible for you to see a different GP?
Yes it is
There have been several episodes recently where people have had results like yours (or even higher numbers for TSH) and one GP decided on no further action but another GP that day started them on treatment.
Poppy1987 You seem to have put up vitamin test results in a separate post shortly after this one. It might be a good idea to consolidate the information you're giving us, so that people don't get confused. Could you edit your post here to give the vitamin test results as well as the thyroid results?
Respectfully, your current doctor is an idiot. Having just looked at the results you posted on your other post, it seems the current quack you're seeing doesn't care that you clearly have woeful B12, folate, ferritin and Vit D levels.
You need to see a doctor who has a few brain cells working, because yours would seem to be one of those who just takes the salary and hopes he/she will get away with it...
You may have gut absorption problems - could be pernicious anaemia, could be coeliac disease, or it could just be that your untreated Hashimoto's is causing the issue (hypothyroidism lowers stomach acid meaning your body struggles to pull nutrition from the food you eat).
Please - see another doctor ASAP.
Ferritin 6 (15 - 150) taking 3 ferrous fumarate a day since 2014
Folate 2.2 (2.5 - 19.5) taking 5mg folic acid once a day since 2016
Vitamin B12 201 (190 - 900)
Vitamin D 23.6
Oh my stars. To state the obvious, 3 of those results are woefully deficient and below their reference range and the 4th is pushing on the floor of its reference range.
Ferritin 6 (15 - 150) taking 3 ferrous fumarate a day since 2014
Well, the ferrous fumarate is plainly not working as you're well below the reference range. You need investigations as to why and you need infusions to raise your level - I'll dig up a SeasideSusie response to someone similar.
ETA: see, e.g., this response to someone with similar levels: healthunlocked.com/thyroidu...
Folate 2.2 (2.5 - 19.5) taking 5mg folic acid once a day since 2016
Again, not getting the job done and you need to know why you're still below the reference range. I'm going to assume that you were investigated for possible B12 deficiency in 2016 before you were started on folic acid?
Vitamin B12 201 (190 - 900)
Unimpressively within the reference range but see above about folate.
Vitamin D 23.6 taking 800iu vitamin D once a day since 2014
Again, not improving, still in the deficiency category and you need loading dosages of vitamin D to improve matters. See the above link for advice from SeasideSusie about this.
Poppy1987 Oh dear, we seem to have possibly the worse and most stupid doctor of all here. I think yours has very possibly won "Donkey of the Month" award!
These two statements are ridiculous considering your results:
GP says I don't need levo
Thankyou GP says because I have hyperthyroid symptoms that means I don't need it.
Your GP is a complete ass and should either go back to doctor school and learn a few things, or find another job which doesn't involve playing with people's health.
**
thyroid peroxidase antibodies of 228 (<34) and thyroglobulin antibodies of 369.5 (<115)
You now know that your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
When the antibodies attack they dump a load of hormone into your bloodstream and this can give you hyper type symptoms.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Read and learn all you can about Hashi's because you are going to have to help yourself here, very few doctors know anything about it or how it affects the patient, and most dismiss antibodies as being of no importance.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
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Hashi's and gut/absorption problems tend to go hand in hand the the result if often dire nutrient levels, which yours very definitely are. Vitamins and minerals need to be at optimal levels for thyroid hormone to work, but the absorption problem needs addressing so you can address the nutrient levels. SlowDragon will pop along later and she has some links and information to help there.
In the meantinme:
Ferritin 6 (15 - 150) taking 3 ferrous fumarate a day since 2014
You need to ask your GP why, after 3 years of supplementing, is your ferritin still below range. Ask him to look into absorption problems such as coeliac, h-pylori, B12 deficiency. He needs to be investigating this. Don't let him ignore it any longer.
As you are taking 3 x ferrous fumarate daily, have you been diagnosed with Iron Deficiency Anaemia as that is the usual treatment for that.
As for ferritin - this needs to be at least 70 for thyroid hormone to work (our own or replacement), preferably half way through range. As your level hasn't improved you should ask for an iron infusion which will raise your level within 24-48 hours.
Also, 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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Folate 2.2 (2.5 - 19.5) taking 5mg folic acid once a day since 2016 Vitamin B12 201 (190 - 900)
Again, you need to ask your GP why you are still folate deficient despite supplementing. Absorption again comes into this, it ought to be obvious to your GP.
Were you checked for B12 deficiency - check now b12deficiency.info/signs-an... Be aware that taking folic acid can mask signs of B12 deficiency so think back to before you started it.
What you need to do now is pop over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc Quote your folate/B12 results, mention that you are taking folic acid and mention any signs of B12 deficiency. Also quote your ferritin result (and say if you have been diagnosed with iron deficiency anaemia) and if you have had a full blood count and iron panel carried out quote those results as well.
The PA forum will advise how to go forward with this with your GP. It's quite possible that you have Pernicious Anaemia and you may need B12 injections.
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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Vitamin D 23.6
Point out to your GP that you have severe Vit D deficiency and that you wish to be prescribed loading doses according to NICE treatment summary for Vit D deficiency:
cks.nice.org.uk/vitamin-d-d...
"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Do not accept 800iu, kick, scream, threaten to stage a sit in at the surgery if necessary, but you need those loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3
vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 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.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
naturalnews.com/046401_magn...
Check out the other cofactors too.
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TSH 11.4 (0.27 - 4.20)
Free T4 9.5 (12 - 22)
Free T3 3.3 (3.1 - 6.8)
And of course you need an immediate prescription for Levo. Unless you are elderly or have a heart condition, do not accept less thn 50mcg daily. You will then need retesting every 6-8 weeks with an increase of 25mcg, and this continues every 6-8 weeks until your symptoms abate and you feel well. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
**
I think most of us here would say you should not bother with this GP again, see a different one, get treatment and investigations sorted, then make a formal complain for negligence against this one.
Your response is so full of good info! Thank you!! My doctor is up next month for most stupid. He said my B-12 level at 1001 was too high and to cut it back, which I did. Big mistake. So I believe that I've gone from mere hypo to Hashi's. I am in the testing process now, but my symptoms have changed a lot. He REFUSED to medicate me for 10 years even though I had increasing weight gain for NO reason, and at some point, I started to have all of the other symptoms of hypo. Recently I have been so incredibly fatigued, felt so bad, and got sick and fatigued after healthy eating. My liver enzymes are now above range as hypo can affect the liver as well. On my own, I went back to taking a very high dose of Methyl B-12 and Methyl Folate (vitamin B-9) and taking a liver detox. I also take a good multi-vitamin, multi-mineral, Vitamins C, D3, E, Alpha Lipoic Acid, Ashwaghandha, and Selenium. After 2-3 weeks of this I am feeling SO MUCH BETTER. I already eat gluten, dairy, processed food, and almost sugar free. Following a Paleo (Caveman) diet is a good idea for those with thyroid, adrenal and ataxia problems. B-12 should be taken sublingually for maximum effectiveness. I also got sick on levo, and have found that the naturals (Armour and NP Raw Thyroid) worked best for me with no ill side effects. They are by prescription as well. They are also said to work better than any of the synthetics. Well, duh, they are NOT drugs, and are thought to come from the thyroid of a cow. All natural!
But, worst of all, he sent me for 2 unnecessary surgeries that have cost me my mind, body and life. I'd like to have him taken out and shot. Haha. I have since switched GP's as at least this one listens to me. And like one of you said, I know more than she does, and she does not have a doctor ego all wrapped up in things. But because I was way over drugged for the anesthesia on BOTH surgeries, I now have all of the symptoms of Canvas ataxia as well, complete with wheelchair. I am on both sites. Oh joy!!
Beware of stupid and/or neglectful doctors. They can and do ruin your health and life.
You desperately need to start on Levothyroxine (replacement thyroid hormones). Starting dose is usually 50mcg. You may need to start lower at 25mcg, because your vitamins are so low
Essential to increase your vitamin supplements as well in SeasideSusie excellent detailed supplements advice
When vitamins are this low you get hyper type symptoms because thyroid hormones can NOT work
How long have these been this low? GP has been negligent to let this happen
They are low because you have Hashimotos and are very hypo.
How many other thyroid tests have you had previous to this? Would suspect your TSH has been high as long as you have been supplementing. Hashimoto’s creeps up for years
Why has GP done nothing?
See different GP and also ask for them to consider coeliac testing for these very poor vitamins
This should give them a shove in the right direction.
According to The Thyroid Pharmacist website only about 5% of us with Hashimoto’s are coeliac but over 80% are gluten intolerant
Getting Started on replacement thyroid hormones (levothyroxine) and vitamin supplements in correct doses will all help enormously
But changing to strictly gluten free is very likely essential
See lots of my replies to others - sorry I am out and answering on my phone so difficult to add links
Hashimoto’s is very poorly understood by many medics. It’s as much a disease of the gut as the thyroid
Getting diagnosed is half the battle.
I wondered- are you not the typical hypo patient. Ignorant GP’s tend to assume we must be over weight to be hypo, but a significant number are very skinny and struggle to gain weight......because the gut is so badly affected
It’s a lot to take on, especially when you feel so rough
This support group is a lifeline for so many. Come back, ask as many questions as you need
There’s always someone here to help
Hi, I have Hashimotos & have found going strictly gluten free transformed my life. I'll never be back to how I was before developing the disease but I've gone from chronic tiredness, with depression as a consequence of the fatigue, to feeling pretty good. In 2013 my TPO antibody level was 728 & now it's the same as yours. You have Hashimoto's Hypothyroidism & need a thyroxine prescription & a different GP. The book "Help for Hashimoto's" helped me a lot & my sympathetic GP now listens to what I have to say as I know more than her. I bought the information pack from Thyroid UK & found it very helpful too.
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