Newly diagnosed Hashimotos seeking advice please

Hello Everyone,

I have been lurking for a few days and have now decided to request some information if thats ok.

Please forgive the lengthy introduction and bear with, but I think providing some background information maybe useful. Hopefully you will stay awake until the end!!

I am 51 years of age and until about six months ago was fit and well with an active lifestyle, running ,yoga and weights to keep fit. During the last few months I have gained two stone in weight which I largely attributed to it being winter as I do tend to suffer a bit from SAD syndrome and had no energy to do any exercise. I have had significant lower back pain for some months and attended the GP with a view to discussing this further .I was also suffering with restless legs for the preceding three weeks which was interfering with my sleep and subsequent ability to do my job. The GP agreed that it could possibly be my thyroid and arranged for blood tests. I was referred to a chiropracter for my back issues who suggested that I may be suffering from adrenal fatigue.

My blood tests came back as borderline and the GP suggested we repeat them in 3 months. By April my tsh was 47, T4 less than 2 and antibodies were 1300. I was by this time feeling very unwell. My sleep was severely affected as I could only sleep for 15 minutes at a time before being jolted awake by what I think may have been cortisol ( I may be wrong- the feeling was similiar to being wired on caffeine). I had by this time started doing some research of my own in an effort to take control of my health and gave up gluten thinking that I may have 'leaky gut' syndrome.

The GP rang me to give me the results and commenced me on 100 mcgs of levothyroxine with a prescription to be collected the folllowing day. I have since seen my own GP who sadly seemed rather dismissive and suggested that my feelings of still not feeling ' right' whilst on the levo were something which I would probably have to get used to !! When I described the feelings of being wired and unable to sleep she inferred that it was due to anxiety. At this point I was starting to feel quite low, could hardly walk and was sleeping 13 hours a day some days, and not sleeping at all on other nights due to being wired.

I then ascertained that taking the levo at night suits some people and lo and behold- it was like a miracle!!

It has taken me the last three weeks to start to feel a bit normal ish again. Although I still get days when I have lots of pain in my muscles and joints, and sleep the whole day long. Also, my skin is dry as sandpaper, I still feel the cold, and have no energy to do any exercise but at least I can walk the dog which is something I could not do a couple of months ago.

While I know that it is early days and I should be grateful that I do feel significantly better, there is no consistency at the moment.

I have to go back for bloods in two weeks so I am trying to arm myself with as much information as possible both to stand up to the GP as well as doing what I can to support my own health. I have a lot of living to do before I will be incapacitated by this gift that keeps on giving ( hashimotos to you and me!!)

I take selenium, magnesium, holy basil (at night if I cant sleep) evening primrose and did have L-glutamine caps but read somewhere that they are useless as it is the powder that is needed.

I am gluten ,sugar and dairy free, drink kombucha for my possible gut issues and eat a very healthy diet. The only thing which I need to do is give up the alcohol for a spell to see if that helps me lose weight although I have lost 3 pounds in the last two weeks by doing the 5:2 diet.

My questions are thus.

is it worth me exploring the addition of some thyroid support supplements as advocated by some members? If so, which ones?

I have looked into B12 and my GP is checking my levels in a couple of weeks. What are considered to be normal levels?

Does T3 get checked routinely or is this something which has to be specifically requested? When I asked my GP at my last appointment she told me that they check it but they dont report on it!!

If I take my Levo at night, do I miss out the dose before my 9am bloods i.e. the night before and just take it after my bloods?

Will the joint pain improve if I take a thyroid supplement?

My blood pressure has increased since having hashimotos. Is this normal?

thats all for now. I apologise in advance for the lengthy post . It just seems that thyroid disease should be renamed to TOTAL BODY COLLAPSE!!

Thanks in advance!!

17 Replies

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  • My two favorite resources for Hashimoto's patients, lots of good info. PR

    thyroidpharmacist.com/

    thepaleomom.com/

  • Hi

    thanks for that. i have been thinking about buying one of the books but didnt really know which one. I looked at the link for thyroid pharmacist and have already see that there are lots of other things about my general health which may be affecting other areas.

    regards

  • Dr. Wentz (PharmD) is working on her second book which should be out soon. Her website contains a lot of free info on the various problems a person needs to address. Her book is an excellent resource for Hashis patients. Dr. Ballantyne (PhD) also has lots of info on her site about the Paleo diet and the autoimmune diet and has also dealt with these problems herself. Both of these women are bright and capable and will take you on a deep dive into the subject. PR

  • Welcome to the forum, Rubyroo25.

    Your doctor is talking rubbish. If FT3 is requested and tested the finding is reported. Even when a GP requests FT3 some labs decline to test unless TSH is suppressed <0.03. If a GP doesn't request FT3 few labs will test it.

    Leave 24 hours between last dose and blood draw. You can take it immediately after the blood draw and continue to take your normal night time dose. You will probably need a dose increase. It's rare that the starting dose is optimal. Symptoms can lag behind good biochemistry by a couple of months.

    Ask your GP to test ferritin, vitamin D, B12 and folate as low levels are common in hypothyroid patients and can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

  • thanks.

    I am having my cortisol checked but seem to have read somewhere that serum cortisol levels are not reliable.

    Does anyone advocate just biting the bullet and paying for private tests or should I give it a bit longer?

  • Why do you think you have an adrenal problem? It's not automatic. I know your chiropractor said he thought you had, but why did he think that? A good clue would be if you're not converting, but we won't know that if you Don't have your T3 tested. If I were shelling out for private tests, I think an FT3 would be top of my list.

    But you're right, a serum cortisol test is not reliable. Wait and see what the results are before you decide anything that's going to cost money! lol

  • I think adrenal problem would fit in with my stress levels for past ten years. Relationship problems, bringing up 3 children for last ten years on my own, very stressful job change last year for 9 months which I think was possibly the catalyst for my ill health as I was fine before it health wise although as I say, had been experiencing stress in my personal life for a considerable length of time.

  • raypeatforum.com/forum/view...

    Ray Peat wrote:

    “Thyroid is needed for the adrenals to function well, and adequate cholesterol, as raw material. It’s popular to talk about ‘weak adrenals,’ but the adrenal cortex regenerates very well. Animal experimenters can make animals that lack the adrenal medulla by scooping out everything inside the adrenal capsule, and the remaining cells quickly regenerate the steroid producing tissues, the cortex. So I think the ‘low adrenal’ people are simply low thyroid, or deficient in cholesterol or nutrients.”

    — Raymond Peat, PhD

    This is why i don't think it is your Adrenal Glands.

  • I would think that a lot of your problems with the levo stemmed from the fact that you were started on too high a dose. That must have been a tremendous shock to your system. Usually, one starts on 50/75, depending on age and health, and works up in 25 mcg incréments every 6 weeks. Still, it's a bit too late for that now!

    Why are you taking the suppléments you are taking? That is an important question, because one does not just take suppléments for the sake of taking them (sorry, not insulting your intellegence here, just making a point), one takes them because one needs them. And to find out if you need them, you should be tested : vit D, vit B12, folate, iron, ferritin, for starters. You can then go on to selenium, zinc, copper, etc if you have a helpful doctor. But taking too much of some things can be dangerous, vit D for example, or selenium.

    Magnesium is different. Tests are expensive and not very conclusive, so taking about

    350 daily should be ok because most people are deficient, anyway. It is purported to be without danger. BUT, these things Don't work alone. Magnesium works with vit D, calcium, zinc, so you need to have enough of those. Zinc has to be balanced with copper, etc etc etc.

    Plus, quantities should be decided according to your deficiency. For example, if you have a level of 350 for B12, taking 500 mcg a day is not going to be much help. You would need about 7000 daily. A 'normal' (we Don't like that word! lol) level of B12 is over 500 - preferably higher. You can't over-dose on B12 because it's water-soluable. And the higher the better. Under 500 - despite what your doctor may say - is dangerous because it can lead to permenant neurological damage.

    Is that what you meant by 'thyroid supplements'? If not, what did you mean? You could say that Levo was a 'thyroid supplement'.

    Do you get your T3 tested regularly? You'll be Lucky if you get it done once! lol Even if doctors request it, the lab usually refuses to do it. However, it is the most important level to know, so most people are groping in the dark, really, trying to stablise their dose. But Don't look for logic in the thyroid world! And your doctor is bats if she thinks they check it and Don't report on it. They Don't check it because it's too expensive to do.

    Diets are really not recommended when you are in the early stages of hypo. You need the calories. Besides, weight-gain is rarely to do with what you eat. It's your slow metabolism that is causing the weight-gain. But, of course, you do need a nutrient-rich diet. Plenty protein, plenty of fat - yes, fat - fresh fruit and veg. And Don't skimp on the salt, because the adrenals need salt. You should start to lose the weight naturally once your T3 is optimal.

    But gluten, sugar and dairy-free is good. If it helps. Being gluten-free is supposed to lower your antibodies, but you also need your TSH to be suppressed. All the time it is signalling your gland to make more hormone, it is activating the antibodies. No gland activity means no antibody activity.

    You should leave at least 24 hours between your last dose and your blood test. It won't hurt to go without it for a few hours. Take it after the test. The test should be done as early in the morning - like before 9 o'clock - as possible, because that's when the TSH is highest. Don't eat before the test because that will lower your TSH and you want it as high as you can get it if you want to be adequately dosed.

    Take levo one hour before, or two hours after eating, with a large glass of water. And leave a 2 hour gap between other suppléments, and four hours between levo and iron/magnesium/estrogen. Lot's of people like to take it at night.

    Your joint pain will more than likely go when you are optimally replaced, and all your nutrients are optimal. I Don't know what this thyroid supplement is.

    Being hypo can cause your blood pressure to rise, I Don't think it's particularly due to Hashi's. Also being low on iron can make it rise. Very important to optimise your iron. If you are low on iron, you won't be able to convert the levo you're taking into the active T3

    If you are taking Evening Primrose for hair lose, it's a good idea to take Borage Oil with it, they work together.

    That's all I can think of to tell you off hand. But if you have any other questions, please Don't hesitate to ask. :)

    Hugs, Grey

  • Wow, thanks for that Grey.

    I think that I am probably a victim of trying to make sense of a lot of different bits of information on the internet and probably getting it all around my neck.

    By thyroid supplement, I mean thyroid support formula ( amazon) which are meant to be taken alongside thyroid hormones. They do have some favorable reviews so I was thinking that it may be worth a try?

    The vitamins I take are as a result of the different things which I have read on the internet regarding the low vitamin status of hypothyroid patients as well as the fact that if I cant sleep, due to pain or twitchy legs, magnesium seems to help.

    I havent had my electrolytes checked since January at which time they were all fine ( saying that I dont know what my 'fine' B12 was. I am going to request a print out of all my blood results so that I can keep track and report back. I dont know that I have ever had my T3 checked. If I have, there has been no mention of it. When i asked the GP about it, she said they dont report on it and changed the subject ( almost as if she didnt know the significance and didnt want to be asked about it any further)

    Thanks for the advice about the diet, I probably need to give myself a break.

    I am going to buy the Izabella Wentz book as already from the brief look I have had at it, there are lots of issues which may be mixed up with the hashimotos. I have a back tooth with a hole in it which the dentist wanted to remove over a year ago but because I am vain (!!) I have been hanging on to it. It may be that it has been causing me problems in other ways.

    I forgot to mention that I have switched to non fluoride toothpast and drink filtered water ...as read somewhere on the internet!! And my bleeding gums appear to have stopped bleeding !!

  • OK, so, thyroid suppléments on Amazon. As a general rule, avoid them like the plague! I've never seen anyone recommend them on here - quite the opposite. And how do you know those reviews are genuine? It's very easy to get false reviews put up. At best, they are a waste of money, at worst they contain things you really Don't want to take, like iodine. They are just another money-spinner taking advantage of desperate people with ill health. Well, that's my take on them, anyway.

    OK, so different things you've read on the internet... As our doctors are so fond of telling us, 'you can't believe everything you read on the internet'! lol But whatever you've read, it's best to get tested if you can because somethings can be toxic if you take too much. Magnesium, as I said, is different. Most people are deficient in that, not just hypos, because magnesium has become depleted in our soils. The 'twitchy legs' you're referring too are, I imagine Restless Leg Syndrome. And yes, magnesium can help that. But get your selenium tested because you Don't need huge amounts and too much is toxic.

    Electrolytes are things like sodium and potassium - minerals - B12 is a vitamin, although they are now saying that it is actually a hormone. So, did you get your calcium and magnesium tested? They are électrolytes. Always, always ask for a print out of any blood tests you have done. 'Fine' is not a diagnosis, it is an opinion - an uninformed opinion, in the case of most doctors. They will say your results are 'fine' if they are scraping along at the bottom of the range, and that is just not so. You must get the figures, with the ranges, to have any idea what is going on. You just cannot trust your doctor.

    Anyway, as has been said before, your doctor has no idea what she's talking about when it comes to thyroid, so just ignore her. They do not test the FT3 because it's too expensive, and I doubt she even knows what T3 is! My doctor didn't. He asked me what it was! I said T4 is converted to T3. He said, what's T4! lol You will have to have it done privately. But know hurry, because you know you're very hypo, so testing the FT3 at this point isn't going to change much. And your body is still adjusting to that monumental starting dose you were put on. When the TSH gets a bit lower, then it might be a good idea to have it done - possibly with an rT3 thrown in - to see how well you're converting. The TSH won't tell you that.

    If I were you, I would hold off on the adrenal testing til you see how you're doing on Levo, given that you have to pay for it yourself. OK, so you've had a stressful time lately, but that doesn't necessarily mean your adrenals are shot. And they might pick up when you get some more hormone in you. Take care of them, feed them lots of salt and vit C - oodles and oodles of vit C. Plenty of rest and water, and see how they go.

    Non-fluoride toothpaste is good, but it won't have any effect on the anti-bodies. They will still keep on attacking! Filtered water I'm less sure about. OK, so it takes out the chlorine, but it also removes other useful minerals. And it won't remove fluoride, anyway. It's a bit tricky knowing what to drink. But, remember, when you have Hashi's, the problem is not with your gland per se, it is the antibodies that are causing mayhem. So, gluten-free and a suppressed TSH are the way to go. And Don't forget to get your vit D and iron/ferritin checked!

  • Really, i would not waste money on book, just my opinion, having done so myself, oh and supplements too. They can be really bad for you, if taken at higher than recommended doses and being hypo, they won't clear your system very well. Vit. D in my opinion, is pushed hard, at high doses, but the studies are not completed about D.

  • Are you in the US?

  • Hi faith

    no, I am in the UK.

  • Hello rubyroo25 & welcome,

    I would say you do have an adrenal problem as you are clearly making much too much adrenaline which is the cause of you waking at night.

    Four years ago my story was exactly like yours and I too was started on 100 mg Levothyroxine which totally shocked my body.

    I have only just realised the importance of the adrenals and would recommend you have your cortisol tested by performing a saliva test. (Details on Thyroid UK website)

    Be careful when using adaptogens as they can be extremely powerful.

    Don't try dieting to lose weight because your hormones won't let you until they are balanced. A gluten free diet is excellent to reduce that high antibody count and avoid up fermented soy.

    Vitamin levels need to be optimum but you will have to be tested to ascertain deficiencies.

    Do not take thyroid supports until your hormone levels are balanced. Then be very careful to only buy supplements without adrenaline in them.

    I recently took both thyroid and adrenal supports under the supervision of a well known doctor and suffered physchosis for three days, through a massive overdose of adrenaline. These supplements are very potent.

    You might find your blood pressure drops as your antibody level and TSH reduce.

    Above all rubyroo25, be patient as hormones can take a while to balance and cortisol can actually take years to rebuild.

    You have already started on your path to wellness by educating yourself about Hashimotos.

    Hope you feel better soon

    flower007

  • Hi Ruby, you are off to a great start and hopefully you can handle all this information. I'll try not to repeat good advice you have been given. I know that low acid can be a problem for us and it's hard to get minerals digested when you have little acid. Do you think you could take organic vinegar with your meals? There are acid pills or digestive enzymes as well.

    You can't take calcium within four hours of your levo but a calcium/magnesium tablet at bedtime is very helpful with restless legs. Do you think you could manage something there? Possibly take levo earlier in the evening? I'm not sure if it is inflammation that causes nerve problems but neuropathies are quite common.

    You are right about the full spectrum of hypo damage since it is involved in every cell of our body.

    This is a short video I've posted from this doctor. He has many more but you will get the idea of what is affected when you are low thyroid.

  • Thanks heloise and flowers for the advice. In fact everyone who has replied.I have a blood test in a couple of weeks and back to work next week.

    Incidentally, could my lower back pain have anything to do with an adrenal problem?

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