I have been on thyroid medication for almost 20 years now (started in my teens) back then my doctor also gave me a b12 injection every three months.
Moved away to uni so got another doctor who just took me off the b12 injection and upped my dose of thyroxin to 150..
I have been feeling terrible for on and off for the past 10 years or so, doctor says it's the way it is with underactive thyroid and that I just need to keep taking the meds.
I took myself off the thyroxin about 12 months ago and did not really feel any difference until last few weeks.
The left side of my body (arm and leg especially ) feel vey weak and sore but also has a numbness kind of feeling (prickly), usually lasts a few months then gets better and comes back again.
Am feeling dizzy and tired and have tingly patches on my face.
My left arm feels like it is burning if I lift anything including small things like a cup.
I have had to give-up working full time because I feel so unwell all the time, I now work part time even though this was a major sacrifice as I cant really afford part-time.
I am concerned about this and am sick of going to my GP for help and getting turned away with some generic bs all the time, this is largely why I have not been to the doctors in over a year.
I don't know what to do anymore because I think it is something more than a thyroid problem, has anyone got any advice or even if you have similar symptoms....anything to stop me feeling like I am crazy.
Sorry if I waffled.
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mrsc82
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I think you need to see your GP and have thyroid, B12 and folate tested as a matter of urgency. 150mcg Levothyroxine is a substantial dose indicating you had little or no natural thyroid function and it's likely you are profoundly and dangerously hypothyroid if you stopped taking it a year ago. Untreated hypothyroidism will eventually cause significant organ damage which may not always be reversible.
3 monthly B12 injections are usually prescribed for patients with pernicious anaemia which is an autoimmune disease causing B12 deficiency. It is described as pernicious because it was invariably fatal until the connection with B12 deficiency was made.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
The gp said that I don't need b12 injections (I think he is wrong).
I know it is a high dose but needto prove to them that it is not just my thyroid, I understand that I sound crazy doing this it's just that I am so sick of going to Gp for help and being patronized and made to feel stupid.
They honestly don't care all they ever do is give me more thyroxin and blood tests..
They wont even entertain that it could be something other than underactive thyroid which I am convinced it is.
Mrsc82, If you don't like your GP and feel patronised and made to feel stupid you can switch surgery but I really feel you should ask for your thyroid levels and B12 to be tested as soon as possible.
Whether or not you have issues other than underactive thyroid, you must by now be very underactive and the longer you take to see a GP about it the longer your recovery will take.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I have probably been a bit stubborn/stupid, I don't think I have a choice to be honest I will try for an appointment on Friday then look for a new surgery.
Thank you for taking the time to respond to my rant x
Mrsc82, thyroid care can be so abysmal we all need to rant at times. Please post your results with the ranges (figures in brackets after results) in a new question and members will advise. It's likely you'll be started on a lower dose and will need to titrate dose over a few months until you are optimally dosed.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I'm copying and adding to a comment I made earlier to another listmate with a similar question.
I would recommend asking your doctor to test 9am cortisol. Symptoms of low cortisol are very similar to hypothyroidism, in fact I have learned from this group that cortisol is needed for cells to take up thyroid hormone. This was the problem in my daughter's case and we are now waiting for endocrinology referral.
If you are suffering from inflammation (an indicator might be a puffy face or swollen ankles) it is worth experimenting with elimination diets. Some of my daughter's symptoms have improved since cutting out gluten and dairy and we are uncovering a number of other food intolerances, strongly suspecting histamine intolerance.
drknews.com/changing-your-d...
List members are very helpful regarding vitamin and mineral supplements but best to follow their recommendations on the full range of blood tests you need to request first. You could also request a referral to an Endocrinologist. I recommend putting your requests in writing so they may be taken more seriously. There will also be a paper trail in case you need to make a formal complaint about your treatment. Keep fighting. Best of luck.
mrsc82, just want to add that you are very correct that there is so much more to thyroid conditions. All the hormones are very tied into each other. The hypothalamus is a sensory gland and refers messages to the adrenal gland which uses adrenaline and cortisol for any stress reaction. The adrenals also balance glucose/insulin as well as sex hormones, they use cholesterol to to accomplish this and provide steroids. A functional medicine person would look into all of those things but I do not think endocrinologists do any of it.
Hello and please note that I am not a medical professional.
I have done a lot of research re B12d using reliable sources (b12d.org and the pernicious anaemia society) I had many of symptoms and responded really well to to a therapeutic trial of 3 x per week injections.
I was interesting to read recently that in the 1970s injections were given each month, over the decades this went down to every two month and now for many it is 4 x per year (far too little for many)
Guidelines clearly state that there are no certain tests to ascertain deficiency and that symptoms should be the main indicator. Guidelines are frequently ignored for a variety of reasons including time pressures to fully research the complexity of B12 deficiency. I have resorted to self injections which many have to. Some people are okay on tablets. The charity b12d.org founded by the wonderfully caring and informed Dr Chandy
The BCSH Guidelines on the diagnosis and treatment of B12 & Folate Deficiencies is 40 pages long! Here are some important key points made within them which may help those trying to obtain more effective treatment. Link to the BNF - 2009 at bottom of page.
SUMMARY - Page 2: The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency. In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.
INTRODUCTION - Page 2/3: In the majority of situations, the recommendations inevitably rely more on clinical judgement and consensus than objective laboratory data.
COBALAMIN DEFICIENCY - Page 3: However, the majority of patients do not have such a clear cut picture. Neurological presentation (peripheral neuropathy, sub-acute combined degeneration of the cord) may occur in the absence of haematological changes, and early treatment is essential to avoid permanent neurological disability.
Furthermore, patients with strong clinical features of cobalamin deficiency may have serum cobalamin levels which lie within the reference range. In the presence of true cobalamin deficiency, the serum folate is often normal or can be elevated. However, a low serum cobalamin level may be found in the presence of folate deficiency.
TESTS TO CONFIRM/DIAGNOSE COBALAMIN DEFICIENCY - Page 4: The absence of a raised MCV cannot be used to exclude the need for cobalamin testing since neurological impairment occurs with a normal MCV in 25% of cases.
(b) SERUM COBALAMIN - Page 4: However, it lacks the specificity and sensitivity required of a robust diagnostic test . . Some assays may give false normal results in sera with high titre anti-intrinsic factor antibodies.
(e) HOLOTRANSCOBALAMIN (HoloTC) - Page 5:. . . an immunoassay for this fraction is now available . . . However, arguments have been raised against accepting this . . . Despite this, the assay has a smaller ‘grey zone’ (uncertainty range) than serum cobalamin assays and better sensitivity and specificity characteristics.
Further studies are needed to evaluate the clinical utility of HoloTC in assessing cobalamin deficiency in a routine high output laboratory testing. It may cut down the percentage of indeterminate results, particularly in patients over the age of 65 years. There is the added advantage of use in pregnancy and in patients on oral contraceptives since the HoloTC fraction of cobalamin does not seem to be subject to the physiological drop seen in total serum cobalamin over the course of pregnancy.
it appears to be a strong candidate for future routine first line assessment of cobalamin deficiency, particularly if costs of the test become favourable.
RECOMMENDATIONS - Page 6: The report providing the result of a serum cobalamin assay should include the following:
* The interpretation of the result should be considered in relation to the clinical circumstances
* Falsely low serum cobalamin levels may be seen in the presence of folate deficiency or technical issues
* Neurological symptoms due to cobalamin deficiency may occur in the presence of a normal MCV
* Holotranscobalamin is suggested as a suitable assay for assessment of cobalamin status in a routine diagnostic laboratory in the future
(a) ANTI-INTRINSIC FACTOR ANTIBODY - Page 7:
. . . the finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia.
High titre intrinsic factor antibody may interfere with assays of cobalamin, leading to a false normal serum cobalamin. Testing for intrinsic factor antibody is therefore advised in patients with strong clinical features of deficiency such as megaloblastic anaemia or sub-acute combined degeneration of the cord despite a normal serum cobalamin level. In these cases pre-treatment serum should be stored for investigation with an alternative assay (HoloTC or MMA) to confirm the presence of a severe deficiency.
RECOMMENDATIONS - Page 8: * All patients with anaemia, neuropathy or glossitis, and suspected of having pernicious anaemia, should be tested for anti-intrinsic factor antibody regardless of cobalamin levels.
* Patients found to have a low serum cobalamin level in the absence of anaemia, and who do not have food malabsorption or other causes of deficiency, should be tested for IFAB to clarify whether they have an early/latent presentation of pernicious anaemia.
C. TREATMENT OF COBALAMIN DEFICIENCY - Page 8: The BNF advises that patients presenting with neurological symptoms should receive 1000mcg on alternative days until there is no further improvement. However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment. No further testing for cobalamin levels is required.
RECOMMENDATIONS - Page 9: * Treatment of established cobalamin deficiency should follow the schedules in the British National Formulary. * Initial treatment with oral cobalamin may not be appropriate in pernicious anaemia, but may be considered in maintenance or correction of suboptimal levels in asymptomatic patients.
D. RECOMMENDATIONS ON CLINICAL APPROACH - Page 10: * Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin.
* Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response.
(b) BORDERLINE/NORMAL SERUM COBALAMIN (with anaemia or other symptoms) - Page 11:
RECOMMENDATION: Serum cobalamin level of greater than 148 pmol/L (200 ng/l) in the presence of a strong clinical suspicion of cobalamin deficiency should be evaluated further with MMA, tHcy or HoloTC and a trial of hydroxocobalamin given to ascertain any clinical improvement.
(h) POOR ABSORPTION DUE TO GASTROINTESTINAL . . - Page 14: Patients who have had gastric surgery have a high prevalence of cobalamin deficiency and more recently, treatments for obesity including gastric banding and gastric bypass surgery also lead to cobalamin deficiency.
‘Food-bound cobalamin malabsorption’ has been used to define a group of disorders characterised by gastric hypochlorhydria due to age-related gastric atrophy or secondary to drugs such as the proton pump inhibitors. In such conditions the cobalamin may not be separated from food protein and therefore is unavailable to the intrinsic factor. This is associated with 30-40% of cases of sub-clinical cobalamin deficiency.
The degree of this form of malabsorption can vary and the dose of oral cobalamin necessary to correct it cannot be prescriptive. Dose finding studies using 2.5μg to 1000 μg of oral cyanocobalamin have shown good response in terms of serum cobalamin using lower doses but lesser response in terms of tHcy and MMA. A pragmatic approach would suggest starting with a low dose and increasing it as necessary. Future studies should help to clarify what parameters to use in assessing replacement therapy.
P.S: of course many health conditions are comorbid with others. Many health problems originate from poor gut health and if this can be addressed then it can really help. Many people find this website to be very well researched and ethical. mercola.com. Wishing you well
One thing I wonder about is if your GP has been giving the impression that being hypothyroid is quite trivial and that Levothyroxine is the only treatment.
As Clutter is saying it can be very serious. But also, if you hang around this forum you will see that lots of people do not do at all well on the standard levo treatment, and can go through years of illness or other complications trying to get on the right dose or other forms of thyroid replacement, or to get their adrenals and vitamins in order to help the replacement work.
Dr Peatfield, who is quite popular on the forum, talks about how hypothyroid can mimic almost any other disease, this is because every cell in your body requires thyroxine to function.
So it may be that your hypothyroid was never properly treated, and there are other avenues to go down. Your doctor will not mention these, but you can read about them on this forum, and can always post blood test results and will get advice on where to turn next.
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