I've had several different docs. Now in a new state for the past 15 months. Having a hard time starting healthcare all over. Just turned 65 and went through all the confusion of Medicare. . .that was not fun. Have a partner...so not totally alone, but feel pretty isolated. Miss my community garden. Lawn here has very poor soil, but trying.
Want to know more about taking levo, anti depressants and statins together. I've never been on a statin drug before. I believe I had a very bad reaction so I stopped taking it. Trying to work through a mental block to go back to the doc. Had some BAD experiences with healthcare people here.
I love taking pictures. This is one I took last Fall.
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Smile4U
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That's a gorgeous photo, Smile4U, welcome to the forum.
So, levo should be taken on its own, on an empty stomach, at least one hour before eating or drinking anything other than water. And, at least two hours before taking any other medication/supplements.
Are you sure you really need to take a statin? Is it even desirable? It's well-known that they do nothing for women, and are not recommended for hypos. If you have high cholesterols, it's more than likely because your T3 is low. If you were adequately treated, your cholesterol would come down and your wouldn't need a statin. Not that high cholesterol is a problem, because it isn't. It doesn't cause heart attacks or strokes, as doctors tell us. It is necessary for good health - without it you would fall apart!
Somewhat the same with antidepressants. Anxiety/depression, whatever you're taking it for, is more than likely a hypo symptom. If you were adequately treated you wouldn't need it.
So, it really does sound like you're under-medicated, I'm afraid.
I have deeper other issues...like PTSD. So the issue is 'does the hypo make it worse?' Yes, yes... I have taken my levo correctly for years. Thanks for the info on cholesterol. Didn't know that. Will take this back to the doc...when I get up the nerve to go back.
I have many more pics I can share. Glad you like it.
Don't expect any co-operation from your doctor on the cholesterol/statin front. They would far rather prescribe statins and antidepressants than thyroid hormones. Hormones frighten them a little, and they are so terrified of over-medicating that they would rather under-medicate, to the detriment of the patient. Also, in the UK at least, they get financial incentives to prescribe anti-Ds and statins, don't know if it's the same in the US, could very easily be.
Welcome to forum. Because each lab has its own reference range, when you post your test results, you need to put the reference values in parentheses after each item. Assuming you'd gone to Quest, for example, your FT4 reference range would be (0.8 - 1.8 ng/dL). Before anyone is able to comment, those references ranges are needed.
That said, your FT4 is low and your TSH is high for someone who is being treated for hypothyroidism. A clinical writer on thyroid disease once observed, "Failure of treatment is easily overlooked."
There are many compelling arguments (anemia, high cholesterol, TSH, FT4) that your hypothyroidism treatment has been ineffective. The nice thing about Medicare is you get to go wherever you want (unless you're enrolled in an HMO Medicare Advantage Plan), so you may want to seek out another endocrinologist who's able to recognize the problem here.
I thought they were universal... give me an E for effort anyway..............So, there they ALL are. I do not know all the jargon...that's why I'm here. That's why I posted my tests... I have no idea what all those numbers mean. Doesn't mean I'm numb....just means I was never taught what they mean. I'm researching this to learn and I've reached out here for help to understand. --I don't remember ever getting this many tests at one time before. Some values I understand...others are new to me.
I live in a more rural area where there are not that many choices. I have to make what I have work. I believe if I DO learn more, my doc will listen to me. I know I don't want to take these other pills.
Your dose is a starter dose - how long have you been taking that amount ? You need testig every 6/8 weeks and your dose adjusted accordingly. The low in range T4 is a storage hormone and needs to convert into the ACTIVE thyroid hormone T3. No result for T3 above and as your T4 is low then so would the T3. This would be the cause of your raised cholesterol as suggested by greygoose and other symptoms.
T3 is needed in every cell of your body - the brain has first call and then the gut and heart. So when the result is low there isn't enough to go around ...
The above link will explain many thyroid mysteries 😊
Your VitD result needs to be around 60 - read up in the link below. It's an American site ... VitD is much more than a vitamin. Are you supplementing ?
Are you supplementing B12 ? - as your result is over range ? I wouldn't touch statins if I were you. If you type Statins into the Search Box above endless posts on the topic will appear ..
Marz, no, I'm not taking vitamin B12. That must be going down now. Back in November when the test were done, I was taking one tab a day but I quit right after the results came in. D - YES, every day now. I also take selenium and thinking of including zinc again, any thoughts? I will go read from the links when I'm done here and give you some feedback.
Going to get some courage up and go in for some retests. When I talk to the doc I'm going to ask her to up my dose, as I also know this is a starter dose. I have taken much more in the past, I think 100, so it's nothing new. I've been on this level for years. Never really thought about it. . . so much going on in my life, but in time effectiveness can wane of, right?
I am going to put my foot down on statins. Like I said, something in this cocktail of drugs messed with me bad right after Christmas. NOT going for a repeat of that.
Any suggestions on how to get the doc to order a T3 test? Anything else I should be asking for?
I REALLY appreciate all this input. Thank you so much.
When supplementing with B12 further testing will produce skewed results ! The test will reveal the B12 in your blood and not in your cells where it is needed. Any excess will be excreted ..
T3 is the most important test as it is the ACTIVE hormone needed in every cell of your body - trillions and trillions. So if your level is low then there is not enough to go around and things begin to go wrong.
Well... guess I posted a little different than what's the norm here... but you get the idea. Give me a break. I put a lot of work into even Putting Them In Here. K? Not use to being so open with such personal data so I'd like some support if possible, not criticism.
It's not a criticism, the reference ranges for each test result are very necessary because each lab will have its own, according to the equipment and assay method used. Then you have to factor in that there can be different units of measurement between the US and the U.K. which will make the numbers misleading unless the ranges are there. So for instance, one UK lab might have a FT4 reference range of (12 - 22) and your result of 1.05 would look very strange against that indicating that you were quite unwell; whereas if, as suggested, the lab testing your blood has a reference range of (0.8 - 1.8), the result appears entirely different.
Wasn't really referring to anything in particular. Please don't assume I was. Just in a very sensitive state right now. I really need some reassurance, human kindness. I've been through some personal hell recently. Maybe some don't realize they come off kind a cold...or maybe it's just my skewed presumption. I don't know. Maybe I signed up at the wrong time ..................................
yes, our countries may have our differences in handling results, good to keep that in mind, thank you.
Smile4u, although lots of things impact thyroid, these are the specific thyroid tests you've got:
Free T4:1.05 ng/dL (0.78 - 2.19)
TSH: 4.090 micro-Intl units/mL (0.465 - 4.680)
These show you are very very undermedicated. FreeT4 shows how much of the hormone from your tablets is available in your blood. Ideally you want that close to the top of the range, and yours is right at the bottom.
TSH is thyroid stimulating hormone. This is a message made by your brain to call your thyroid to make more thyroxine. We want this to be quite low, indicating that your brain is comfortable with the amount of thyroid hormone you've got. Yours is almost at the top of the range, which indicates your body needs more hormone. Probably you'll want this around 1 or even quite a bit below.
What you need is a dose increase. You'll probably need a few increases to get you feeling well, but with thyroid these always go slowly! You need to increase by 25mcg, then get retested after 6 weeks, and have another adjustment to your dose, then another test in 6 weeks, and on like that.
Is this ever a relief to hear, now. After a few weeks on these drugs I had incredible pain in my legs. I could hardly walk! Now I know why. Thank you for letting me know! You all may be far away in a different country, but you've helped me so so much.
"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."
Clearly with a TSH of 4 you are still hypothyroid
Cholesterol levels should naturally drop as thyroid is under better treatment on higher dose of Levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also extremely important to regularly test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Incredibly important to know if cause of your hypothyroidism is due to autoimmune thyroid disease (Hashimoto's)
Vast majority of primary hypothyroidism is due to Hashimoto's
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
I had a very bad experience with a statin drug. Began waking up with a bad backache--sharp pains across the middle of my back. I figured I needed a new mattress, but $1,000 later, that did not fix the problem. Finally I ran across an article about statins breaking down muscle and so I did an experiment. I stopped taking the drug, and 3 days later, the pain was gone. Completely. Hmmm. I waited two weeks and then tried taking the drug again. Welcome back back pain. So I stopped taking the pills again. I read up on alternative treatments and began taking Slow release niacin. My numbers went down and no pain!
I have some niacin. It's not slow release but I can break up a dose throughout the day. I'll try that. I suffered the very same thing with my back. Your post really hit home. Thank you so much for sharing.
The reason for slow-release is that the regular type often causes flushing, with is bothersome to some folks. The brand I take is actually named "Slo-Niacin."
Just want to add that no-one here will ever criticise you. All criticism is for your doctor, who appears to be just as useless as all the rest, world-wide over! This is something that is very hard to come to terms with, I know, but it is a universal problem that doctors know nothing about thyroid. The reason for that is that they just don't learn about it in med school. And the reason they don't learn about it in med school is Big Pharma.
BP controls what doctors learn in med school, because they put up the financing. And BP would lose an awful lot of money if doctors knew how to treat thyroid, and actually make the patient well. Because we have so many symptoms, BP has developed a drug for every one - statins and anti-depressants for a start, Beta-Blockers, PPIs, diet pills, etc. etc. etc. - and, has taught doctors to treat every symptom like a separate disease, rather than treating the root cause. It has taught doctors not to do the right tests - you asked what was missing, well, Free T3, TPO antibodies and Tg antibodies were missing. BP has said they aren't necessary, not important, whereas in reality, the FT3 is the most important number, and it's essential to know if you have high antibodies because it will mean that your hypo is autoimmune, and we have to know how that works. But, doctors don't know how it works, which causes all sorts of problems for the patient. And so it goes on…
Most people on this forum know more about thyroid than most doctors - I've even had a doctor say to me that I knew more than him! So, we can come across as rather cold and clinical in print, when we get caught up in the numbers and the details - which are oh so important for correct treatment! And when we start cussing and groaning about stupid doctors. But, it's not personal, and certainly no-one is blaming you for not knowing all about it, yet. So, please, just go with us, and answer the questions. I realise it's a bit like getting caught up in a whirlwind, but many people have found themselves getting better after coming on this forum. So, it is worth it, in the end. We only have your best interests at heart, and no-one is giving us kick-backs for pushing certain drugs! We are at the sharp end of all this, and have learnt by experience and many, many hours of reading research papers - something doctors don't tend to do. But, as it is the written word, you cannot see the expressions on our faces, and without using 'lol' and it's sometimes difficult to see our good intent. But, I assure you, out intentions are all good.
Greygoose, your post was like opening up a window and getting a deep infusion of Fresh Air. Thank you so much. I'm alone here 'in this.' I'm going to go to the doc armed with all this info and my own past experience and put my foot down here and there.
I think if I approach the doc with the idea of taking the tests that weren't taken, and suggest we give this approach a try and watch the test results, she might be open to it. But I am Not going to take any statins. They really mess me up. And No anti-depressant has ever worked for me...including Zoloft - she put me on the generic form of this one. She may be pissed, but I don't care. I stopped taking everything except the levo. I take my right to be a major player in my healthcare team very seriously.
I'm reading the book, Medical Medium: Thyroid Healing by Anthony William. One of the things I read is that as far as health care, we actually are 25 years behind in treatments compared to the research and science going on in the present. That's the way Big P wants to keep it I guess. The author mentioned a CEO from a big company had a brain tumor. When he dug in and found out how far behind treatment was, he said if he ran his company this way, his company wouldn't last long. Paraphrasing - but that's the jist.
And thank you for helping me understand the total frustration with doctors and present treatment for thyroid. Now it makes Total Sense. This is a unique forum. One I believe can really help and support me. All this information means so much to me. I feel more armed and ready to go back to the doc and get my treatment on track. Thank you all.
I'm so pleased that I was able to help. I do so hate seeing people miserable and sick because they are undiagnosed/badly treated by doctors who think they know everything but know nothing.
The medical medium is right in what he says about treatment being 25 years behind science - I would actually put it at longer than that because The knowledge was there in the early 1900s, but it has been stifled by Big Pharma, and young doctors in med school no-longer learn all they need to know.
However, he doesn't know everything, either. And, he has some very strange ideas about thyroid. He doesn't understand the basics himself, so I really would take everything he says about treatment with a pinch of salt. Be very wary of him.
Good luck with your doctor. Do let us know how you get on. And, remember, you have a huge family here, all in the same boat. We will always be here for you.
The Medical Medium appears to be pretty genuine. What other books, or authors would you suggest for hypothyroidism? Another question, how to tell what thyroid condition you have? What's the difference between Hashimoto's, graves, etc.?
Grave's is hyperthyroidism - very high FT4 and FT3, suppressed TSH. To find out if you really have that, you need to test TRAB and TSI antibodies.
Hashimoto's is basically a disease where the immune system attacks the thyroid and slowly destroys it. This means that your Free levels can swing from hypo to 'hyper' and back again, as the dying cells dump their stock of hormone into the blood stream, causing levels of FT4/3 to rise suddenly, and TSH to drop. But, as the excess hormone is used up or excreted, levels will gradually drop down to hypo again.
To find out if you have Hashi's, you need to test TPO antibodies and Tg antibodies. But, it's not always straightforward, because you can have Hashi's without ever having raised antibodies.
But, you can be hypo for other reasons, that are less easy to test for. The main one being Central Hypo. Central hypo is when the problem lies with the pituitary (Secondary hypo) or the hypothalamus (Tertiary Hypo), rather than the thyroid itself (Primary Hypo). With Central Hypo, the TSH will be low, low 'normal' or slightly raised, but the Frees will be low.
Plus things like accident damage to the thyroid, xray damage, endocrine disruptors, etc. can all cause hypothyroidism, but you're not always going to find out what exactly has caused it.
🤗🤗🤗🤗🤗🤗, Smile4U. We all understand what a terribly difficult time you are having. We've all been through it, too, and we are here for your support and to point you toward sources of information to guide your journey.
Teaching your doctor is not impossible. I've been able to inform my board-certified endocrinologist and guide my own diagnostics and treatment, and this with a brain injury. You simply have to ask, for example, "Could we test my Free T3 and Reverse T3 next time we check my Free T4?" (Those are what I test each time). If you are taking any supplements, you should ask for tests for those levels, so you are not over supplementing yourself. Too much of anything can be as bad as too little.
There is a pinned post over on the right side of the page, near the top. It's Helvella's Brief Thyroid Glossary, and you can download a copy to your device and start learning the important terms.
You may find that your body is not genetically programmed to utilize the T4 optimally, and this revelation will unleash a whole new flood of input and advice from everyone who has been down that rocky path. There are DIO1 genetic variations and DIO2 genetic variations that can throttle your body's ability to utilize the levothyroxine you've been taking. "Failure of treatment is easily overlooked," noted a clinician when speaking of how often doctors commence treatment and then declare "all ok" based on blood tests, when in reality all is not ok, but could, in fact, be very dire. It sounds like you are in a dire state.
I would not use the Medical Medium as a guide, however, for his title should be The Medium, omitting Medical. For one, he claims that Epstein Barr Virus (EBV) is a trigger for thyroid disease. In fact, over 90% of humanity has been exposed to EBV and carries measurable evidence of it. However, 90% of people do not have thyroid disease, so that tears a gaping hole in the underlying premise of his persuasive-sounding logic.
Treating your hypothyroidism effectively, with T4 or T3 or both, so that your cells have enough to run their engines, will solve all of the rest of the problems.
Makes total sense to me. And I will look for that download. I want to feel better. I'm just not going to budge on my choice of treatment. If it's not working there's a reason for it. It would be so stupid to just keep doing the same thing that isn't working, (the def. of insanity...lol).
I'm taking notes and am preparing a final draft to take with me, or share in an email to my doc. Just hope she's open to the research I've done. It's important to go in obviously well informed and prepared to advocate for yourself.
I think I should be getting T3 too. What are people's opinions on Armour Thyroid or treatments like this?
Armour Thyroid, or NatureThroid, would be your doctor's next obvious choice, and you simply have to ask for a trial of it. For many people, the proportion of T4 to T3 in these products works great.
I've been on Armour Thyroid before. It seemed to help more. I'm reading up online about this too. Trying to digest all this and come up with an 'approach plan' for my doc. I'm definitely not any better, maybe even worse than I was a year ago. Something has to change. Thank you for your help.
You should definitely ask for the rT3 and T3 blood tests next time, sooner rather than later. A baseline rT3 will help show whether you're converting properly when your T4 dose is increased. My own experience of high rT3 is that it has its own awful symptoms that are totally distinct from simply being under-treated with T4/T3. It's awful and you don't want to experience it.
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Recently Diagnosed
Newly diagnosed-really worried
this is my first post, in need to advice for what to try next
New here and desperately need help with thyroid issues.
