I was diagnosed hypo 2 years ago and since have gradually been prescribed 75mg levo. There has been absolutely zero improvement in my symptoms still suffer terribly with fatigue, have dry almost scaly skin, hair is so thin with no body and baby fine, plus many more like achy muscles, tiny eyebrows, gritty eyes etc. By 8pm I have to literally drag myself upstairs to bed and have, on occasion, slept in my recliner as I was too exhausted to try the stairs. My gp and practice nurse have dismissed all of this as I am now deemed to be testing within the 'normal' range (sorry I don't have any test results and can't really afford private blood testing).
In desperation I started Thiroyd NDT (doc not aware yet) and, after 2 months and increasing slowly to 2.5 grains I'm starting to feel a bit more human 😀 Improving energy levels mainly, nothing much happening with the hair or weight loss yet but early days. I am slightly worried that 2.5 grains is equivalent to a lot more than the levo I was on but wondered if I just wasn't converting the T4?
Also, I've been checking my temperature throughout the day over the past week and my early morning temp is averaging 34.9 with mid afternoon 35.5. I assumed my body temp would increase as my hypo symptoms improved and wondered if anyone else had experienced similar?
Oh and the same day I got my hypo diagnosis I found out I had type 2 diabetes! So I take Metformin and gliclazide too. So as my gp quipped I was doubly eligible for free prescriptions 😕
Any advice or comments would be very welcome as I am having my annual bloods done early July.
Thank you
Jan
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Jangee
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Hello Jan, when I was taking levo I was on 75mcg and now take 2.5 grains of Thiroyd. I feel a lot better on NDT but still had a number of niggling symptoms. I started taking magnesium as I had read it helps to activate T4 to T3 and although its still early days I feel some benefit, not least the very irritating restless legs and tingling which appear to be subsiding. I have no experience of diabetes or the meds you are taking, so hopefully someone else may be able to comment on that.
Hi thanks for the reply. I have just started taking 250mcg of magnesium as well as the Thiroyd so hopefully will start to feel a bit better soon. So, I was thinking of just going up 1/4 grain NDT soon to see what happens but don't want to overmedicate. Has your weight stabilised?
Hi Jan, everything seems to take time. I take around 450mcg of Mg plus transdermal MgChloride oil (I do have a deficiency). I almost stopped taking it when I experienced horrible symptoms (headaches, aching muscles etc), possibly detox, but kept with it and now they have gone I am feeling the benefit. I am a bit atypical when it comes to weight - one of life's skinnies. The most I put on was about 12lbs but this has now gone and I am back to normal weight.
I've always been the opposite, one of life's chubbies lol
Although I did lose some weight prior to my double diagnosis - gp thought because of the diabetes. Now I'm optimally medicated for that the weight is creeping up again. Nothing I do will shift it. The only time recently I lost any weight, very slowly, was trying the Newcastle Diet, ultra low 800 calories, not sustainable 😪
Hi, not au fait with diets I'm afraid. Notice you have reduced gluten and sugar, both a good idea but don't go too heavy on the fruit. Good fats are what the body needs most (and fat doesn't make fat), animal fat, butter, nuts, avocado's, olive oil (not veg oil) and omega 3's etc plus of course fresh veg.
Hi yep can't eat too much fruit especially grapes which I love. I mainly stick with the berries and leafy greens, cauliflower, limited root veggies (miss my roast pots but still have them occasionally). I've been researching the idea that good fat has been wrongly blamed for a myriad of health problems. I'm now having more olive oil, nuts & real butter in my diet. Hardest thing has been cutting out sugar as I love chocolate 😩 X
I am going to make your mouth water now, roast potatoes in the oven! I am sure the occasional treat is fine, well that's what I am telling myself anyway. I had no problem with sugar, but I still dream about bread.
Yes, it seems like a big 'fat' lie, but then did we expect the truth to get in the way of profits from statins et al. I think dark chocolate is OK (70% chocolate) although its not that sweet.
Sounds as if you are well on your way, just needs time and a bit of tweaking - we have all got used to quick fixes over the years.
Me again! Sorry I didn't notice you were on statins. Google "The Great Cholesterol Myth" and have a read. We have been terribly mislead about cholesterol and heart disease. In this book they state that no woman should ever take a statin as there is no scientific evidence that they help. In fact there is not many people statins do help! Good on you taking the coq10 much better idea.
In terms of diets, google ketogenic diet, which is high saturated fat (coconut oil is really good as it is a mid chain triglyceride which the body uses as immediate energy ), moderate protein and low carb. There is scientific research showing it can actually reverse t2 diabetes, (checkout researcher Tim Noakes) along with many other conditions. 800 calories is just miserable and as you said quite unsustainable. It is important that your saturated fats, and all calories in fact, come from whole foods, no processed stuff. But the most important thing for weight loss is optimising your thyroid and other metabolic disorders.
Without seeing your thyroid results it is impossible to advise whether you were optimally medicated, under medicated, or converting poorly. Normal is a broad range so knowing where in range results are is helpful. Ask for a printout of your results and ranges a couple of days after your blood test and post them in a new question for comment.
Arrange your blood test early in the morning when TSH is highest, and fast (water only) as TSH drops after eating and drinking. Take thyroid meds after your blood draw.
Basal temperature can take years to recover and sometimes never does. The main reason to check temperature when self medicating is that sudden spikes can indicate over medication.
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.
Ahh thanks for explaining the temperature thing it was concerning me a bit. Yes I was totally clueless before finding this forum so didn't even realise it was possible to get test results from the gp. I will definitely ask for them after my next bloods are taken in a few weeks time. I don't even know if I have Hashimoto's but do know that, as an auto immune disease, it could likely be linked to my diabetes. Thanks again.
Ask your GP receptionist whether thyroid peroxidase antibodies (TPOab) were tested when you were first diagnosed. If not, ask your GP to include it when you have your thyroid test.
You can ask the practice for a print out of your results. if you post them here it will be clearer how bad things are, clearly pretty bad. A private blood test by post is about £90,
I would have thought with both diabetes and hypo and feeling as bad as you do, you could ask yr gp for a referral to an endo, but make sure you pick a good one from the list here before you go.
you were clearly either massively undertreated or not converting or both.
Did the gp check for antibodies?
At your next test your tsh is likely to be suppressed by the t3 you are taking so be prepared for your idiot gp to be worried.
Thanks for replying - yep I still feel pretty rubbish/totally crap most of the time. I am naturally trusting and a bit of a wimp where my gp and more so my practice nurse are concerned.
The nurse always takes my bloods and has never volunteered any results or info, I asked for a thyroid check 2 weeks ago when I had my diabetes bloods taken but she said, firmly, that that would be checked at my annual blood test early July. I was more forceful and rattled off all my symptoms, mentioned T3 but she just raised her 'lovely full eyebrows' and looked horrified!!
I will make sure not to take my NDT for 24 hours before my tests and insist on a print out of my results. I'm already expecting my doc/nurse to proclaim that all is well and I am perfectly normal/paranoid/depressed/ just old etc ......
Have you tried dietary interventions? Many symptoms can be related to food sensitivities (testing is not reliable, an elimination diet is the gold standard):
Hi - yes I've tried gluten free and currently restrict my carbs to mainly fruit and veg sources and keep under 100gms a day. I've found this has greatly improved my sugar spikes so very helpful in controlling the diabetes. After 3 months of gluten free I didn't feel anything changed with my hypo symptoms. I've cut out nearly all sugar and refined carbs including white pasta, rice & sadly crusty white bread 😞 I think low carbing is forever now for me.
If you were already on levothyroxine the process is that you can switch straight over to NDT by an equivalent amount, then you gradually work up by increasing by a small dose every 2 weeks till you feel much better and relief of symptoms. If you become overstimulated, i.e. too fast pulse/ too hot drop back to the previous dose. Some people take up to around 5 grains daily. 1 grain is equal, in effect, to around 100 levo but NDT contains all of the hormones our healthy gland would have had.
Do you take your dose once daily?
I would take any other medications about 4 hours apart from NDT, just in case there could be an interaction.
I take 1.5 grains first thing about 6.30 ish & another 1 grain around 4pm. Seems to be working 😊 I try to take my other diabetes meds around 10am when I eat something & then at bedtime. At lunchtime I take magnesium & Q10 enzyme. I try to keep on top of taking so many pills but admit it is a struggle some days!
This is an excerpt from the NHS and is self-explanatory.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
A higher cholesterol is a clinical symptom of hypothyroidism and thyroid hormone replacements should/will reduce it. However, reducing cholesterol may not be a good thing.
Dr Kendrick is a doctor who exposes things that aren't strictly true. An excerpt below.
It seems that these authors are trying to shift the thinking away from cholesterol to inflammation. However, before discussing anything else I wanted to point out something that most people may have missed – by looking at a bit of background on the authors. First, Paul Ridker, who ran the JUPITER study, and who is hia hugely influential cardiologist.
It should be noted that Paul Ridker has a major interest in moving thinking about atherosclerosis from a lipid storage disorder to an inflammatory condition. Because he has patent on the high sensitivity CRP test (C-reactive protein).
‘Dr Ridker is named as a coinventor on patents filed by the Brigham and Women’s Hospital that relate to the use of inflammatory markers in cardiovascular disease.’ circ.ahajournals.org/conten...
What this means is that every time someone uses a high sensitivity CRP test, Paul Ridker becomes a little bit richer. However, in this paper, this massive financial conflict of interest is not mentioned. Instead, we get Acknowledgements:
This work was supported in part by grants from the National Heart, Lung, and Blood Institute to Drs Libby (HL-34636, HL-48743, and HL-56985) and Ridker (HL-58755 and HL-63293), and by the Leducq Foundation (to Drs Libby and Ridker). Dr Ridker is also supported by a Distinguished Scientist Award from the Doris Duke Foundation. Dr Maseri is supported by a grant from Fondazione Internazionale di Ricerca Per il Cuore onlus
No conflicts Dr Ridker? Mind you, Paul Ridker does have considerable form in not disclosing his financial conflicts. Some years ago, the Journal of the American Medical Association JAMA, was forced to publish a statement on ‘Unreported Financial Disclosures’ that were spotted in paper ‘Associations of LDL, Cholesterol, Non-HDL Cholesterol, and Apolipoprotein B levels With Risk of Cardiovascular Events Among Patients Treated with Statins: A meta-analysis.’
That is very interesting- I think I need to get off the statin hamster wheel and look at all the evidence. I always thought statins would only be given if there was any family history of heart disease &, as I have no history of this, they wouldn't be prescribed. Thanks for the link Shaws
This is another link and if I've overloaded you just ignore it. I am not medically qualified.
Excerpt:
Statins have been shown to increase your risk of diabetes through a few different mechanisms. The most important one is that they increase insulin resistance, which can be extremely harmful to your health. Increased insulin resistance contributes to chronic inflammation in your body, and inflammation is the hallmark of most diseases. In fact, increased insulin resistance can lead to heart disease, which, ironically, is the primary reason for taking a cholesterol-reducing drug in the first place! It can also promote belly fat, high blood pressure, heart attacks, chronic fatigue, thyroid disruption, and diseases like Parkinson's, Alzheimer's, and cancer.
They follow their 'guidelines'. This is an excerpt from Dr Kendrick (apparently it would seem surgeries get paid for prescribing).
However, there is another degree of self-selection going on here. When I see that a patient is on statins, I tend to be on high alert for any mention of statin related adverse effects. Whilst most other doctors happily dismiss such things as: tiredness, memory loss, joint pains, muscle pains depression, irritability, impotence, stomach pains, skin rashes and the like as ‘nothing to do with statins.’ I tend to think the statin may be the cause.
I then usually say. Stop the statin for a couple of months and see what happens to your, tiredness, memory loss, joint pains etc etc. Very often these symptoms go away. Then what? Then the practice statin prescribing statistics start to look quite bad. The senior partner (who is pretty sympathetic to my cause), has had words. The practice is losing money. I have had to ‘exempt’ more and more patients from the cardiovascular disease indicators.
Just something to try with your temperature. I started my thyroid journey with NDT, though it was called extract then and I dosed purely with a mercury glass thermometer It was very accurate and things worked fine other than a strike in Canada which put me on Levo. But couple of years ago I went back to recording my waking temperature. I threw 2 away as I couldn't possibly be that low, around 34, but I decided to buy from from the chemist indtead. Well it was a little higher but not much! One morning I was lying there glued to a programme on tv, the bleats told nt I had reached my maximum but it was too interesting do I left it in my mouth until the advert break to record my findings! Good thing to have done! It was now a lot higher at the point it switched itself off! I then noticed the beaps happened about the same time so probably not at the time my temperature was at it highest. Give it a go and see if it makes a difference!
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