I've stumbled across this website while looking for information regarding Hypothroidism. I was diagnosed 5 years ago, and was put on Levothyroxine. I am a 41 year old female and have always been in good health except for high stress levels all throughout due to family situation. I will admit I had a severe drinking and substance problem for 23 yrs. The past 5 years I have been drink and substance free.
When my docotor mentioned medcinie for rest of life I thought there must be something else I can do. I wanted to see if I could help my thyroid to be well while mainting a healthy lifestyle and dietary changes. The first two years on Levothyroxine I didn't really notice a big change except for less painful periods. Come the summer of 2012 I had my first panic attack which ensued daily going forth. I had to take a leave of absent from work Oct. 2012 dues to this. During this time my doctor prescribed Sertraline and Clonazepam for the attacks and also upped my Levothyroxine to .05. The next two years of my life were halted and I couldn't leave my home town due to the panic. Also, I felt so ill on all these medicines and thought I could be making things words. During this time I did see a psychologist and continue to do so. I had enough of the medicines and stopped the clonazepam 3 months ago and the Sertraline 2 months ago. I still did not feel right body and head wise and saw my doctor to go over the body sweats and dazed feelings. She sent me for blood work on my thyroid May 2015 (see results below). She told me that she wanted to up the Levothyroxine to .075. I was reluctant to do so but tried it for a week which was hellish. Day 1 my eyesight was blurry and all the days forward had trouble focusing my eyes, constant pressure in head and my skin felt like hot pricklies especially in my arms, and the nervousness started to appear on day 4 and continued heavily. Needless to say on day 8 I went back to my original dose .05 and after a half hour had my first panic attack in months. My doctor told me to stay on the .075, but I cannot do so as my body feels like it's being poisoned. I got such a scare that now I am alternating .05 and .025 for the next 7 weeks until my blood test.
Test results for -
Sensitive TSH / FT4
5.71 / 1.1 Jan 2010 .025 levothryoxine
3.37 / 1.1 Dec 2010 " "
4.66 / 1.1 July 2011 " "
3.76 / 1.1 Oct 2011 " "
6.62 / 1.2 April 2012 " " = highly stressful time due to job location change /panic attacks.
2.48 / 1.3 March 2014 .05 levothyroxine
TSH Reflex / FT4 / Total T3
5.43 / 1.2 / .91 May 2015
I had been doing much of my own research and have come across studies online that says that Subclinical Hypothyroidism may or may not need to be treated with a TSH level under 10. All depending on symptoms, family history, antibodies etc...Also, people with a TSH under 10 may not have any benefit from levothryoxine. I also read that a TSH that is slightly high may be due to something else going on. I asked for an antibody, cortisol, and adrenal testing but was told no. Which was upsetting to me. Why not rule everything out? I have not been diagnosed with any thyroid disease, but been told that my thyroid is a bit on the slow side. Never was told to do anything other than take this pill for the rest of my life. I know people with certain thyroid diseases and no thyroid need to do this, but for someone like me, just a bit on the slow side, does this one size fits all really work? And is it the best solution for me? I will honestly say that going up on the dose of .075 for that 1 week and feeling really sick scared the daylights out of me. Could I be doing more harm than not taking something for the rest of my life cause of a bit on the slow side?
Thank you for taking the time to listen.
Hugs,
Jennifer
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Jennifer2314
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I know I contradict myself saying - in good health / drinking & substance abuse... My yearly blood testings came back fine with no indication of underlying issues.
How are your levels of B12 - Ferritin - Folate - VitD - Iron ? All these need to be optimal for your T4 tablet to work well..... Anti-bodies - have they been tested ?
So your B12 was around 800/900 and your VitD at the top of the range too .....Ferritin needs to be around 80/90 and the Folate mid-range. Do you have the actual results of your B12 and d - or did your Doc say they were fine ? Sadly Docs do not always understand where in the range things need to be when you have thyroid issues ....
My VitD levels were low in Oct 2014 at 19.6; dr gave me high dose Vit D for 3 months and was told to take a supplement and will retest in July. But was told my levels would be fine since taking high dose + supplementation.
I have never been tested for Ferritin or Folate.
My next appt. is in July and will ask for these tests.
Am assuming you were supplementing B12 or taking a B Complex for the result to be that high. Not worth testing whilst supplementing unless you stop for two weeks or more I have read....
Ferritin - stored iron - is important for the T4 your Thyroid produces or the T4 you are taking - to convert into the Active thyroid hormone T3.
Anti-bodies should be tested so you can establish whether or not you have Hashimotos - autoimmune thyroid condition. Sorry I do not agree with GP's who say it doesn't make a difference - am afraid it does.
Marsz, I have been taking the B12 Cyanocobalamin injection for the past few yrs, and never had taken a B Complex.
After reading all of the people responses I have been researching Endos on line. I have found one who practices in the next town from me and am going to call first thing tomorrow morning for an appt.
I am also going to write down all the testing that people have advised to do. And, I hope she is willing to do them.
I am sure you will get some good responses but I am glad that you are taking a fresh look at your thyroid gland dysfunction. Many of us have had the severe symptoms you have had. It comes as a shock and we don't quite know what is happening to our bodies - the fact is that neither do the doctors.
First, never take the word 'normal' with regard to our thyroid gland blood test results. You haven't given the ranges for your blood test but I will say you appear to be underdosed with the fact that your TSH is rising. Your FT4 seems extremely low and T4 has to convert into T3. T3 is the active hormone all of our millions of receptor cells require in order for us to functions normally. This is an extract and you will see that your FT4 is too low:-
FT4 = FREE T4
Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.
The approx. reference range for this test is 10 to 24
and
TT4 = TOTAL T4
Thyroid hormones bound to proteins. TT4 lowers when the thyroid is struggling.
The approx. reference range for this test is 50 to 160.
So you will see that your results are so low I don't understand why your doctors are remiss.
In the UK the guidelines say not to treat till the TSH is 10 but many of us suffer with far lower TSH and many countries medicate when it is around 3. Panic Attacks/sensations can be common initially.
I am not sure what your dose equals - maybe another member will. Usually in the UK levothyroxine comes in 25mcg, 50mcg, 75mcg and 100mcgs. If your dose is too low you cannot get well.
We can do harm to our bodies if we are low on thyroid hormones. It is needed to drive everything from heart to brain and everything else. Once diagnosed we have to take hormones for a lifetime.
I am sorry you have been unwell so long and it is a pity your doctor never tested your Free T3.
More responses will come from members. We have to read and learn in order to recover our health as best we can but it can improve enormously if we're properly treated and a knowledgeable doctor (which is very difficult to find as they are told only to diagnose and treat by the TSH only). Yours isn't doing a good job to start with as a TSH around 1 usually makes us feel better but your other results are too low.
50mcg is only a starting dose and should be increased by 25mcg until you feel well. There used to be only one Brand name, Eltroxin, in the uk but it was stopped and every levo is now a generic. Different makes have different ingredients. If you email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse online article by Dr Toft and read answer to question 6. You will see you are on too low a dose. He was a President to the British Thyroid Association. The BTA guidelines comments are untrue about NDT and Dr Lowe wrote the following article to them but, despite 3 reminders they never responded and Dr Lowe has died due to an accident.
Before the blood tests were introduced our prescritptions were around 150mcg to 300mcg of NDT. Many doctors trained before the blood tests treated patients on symptoms only and most said the modern method of prescribing too low amounts causes problems. The following doctor was before the GMC at least seven times and it certainly wasn't his patients( who travelled throughout Britain to see him) who comlained. He died of a stroke - no wonder.
Very interesting Shaw. Thank you for the information. I will view it over and contact the email. Also, am very appreciative for all the reponses on here and have taken it upon msyelf to search out an endo within my area. I am going to call tomrrow to make an appt. I received so much info on here and will ask her to do the tests that people have mentioned. Thanks again!
Thank you Shaw. I saw my new endo dr today. She was attentive and empathetic to worries. She orderd some blood testing today ; TSH, Free Throxine Index, Thyroid Stimulating Immune Globulins TSI, TPO -Thyroid Peroxidase AB, and Thyrogloblin abs.
Hello helvella, Maybe she has her reasons for this particular test. But, I will be re-testing in 3 months and will ask for the Free T4&3. I just hope she will oblige. Thank you.
Jennifer2314, your high TSH indicates your thyroid is failing and you need thyroid hormone replacement. You can wait until you are overtly hypothyroid (TSH >10) but it is likely you will be very symptomatic by then and it will take a very long time to resolve the symptoms. Long term untreated hypothyroidism can cause heart and other organ damage which isn't always reversible.
Have you tried different brands of Levothyroxine? Different brands have different fillers which can affect tolerance and it may be worth switching to see whether a different brand suits better. People sensitive to dose adjustments can halve the dose increase for a week or two to acclimate before increasing to the full dose.
I can't tolerate Levothyroxine on its own but I'm fine on Levothyroxine+T3 as the T3 calms the adverse effects Levothyroxine causes. It may be worth exploring whether your doctor will prescribe T3 in addition to, or even instead of Levothyroxine and, if you are in the USA, you should be able to find a doctor willing to prescribe Armour, NatureThroid or other NDT which may suit you better than synthetic Levothyroxine.
I have not tried any other brands. I have asked about Armour and got a displeased face. Was told its properties are never at an equel level. And it would be unwise to try it. I know Levothyroxine which is T4 which is suppose to convert to T3..but may not always work. Would you have an idea of why the doctors do not first prescribe the T3 only medicine to see how that works first vs. only givine a T4 medcine?
I will wait to see what my blood levels are after my July blood test, and if need to go up on medicine I will try agian and ask for a more natural one.
Jennifer, The aggressive marketing by the makers of Levothyroxine to med school students, doctors and those responsible for publishing thyroid guidelines have successfully brainwashed generations of doctors into thinking that T3 is dangerous and Armour unstable and dose variable.
It's rubbish, of course, Armour has been used for over a century to treat hypothyroidism and T3 was the first synthetic thyroid treatment prior to Levothyroxine. There used to be potency and stability issues in Armour but for over 20 years Armour, NatureThroid and WP have been listed in the US national formulary which means potency, stability and shelf life conform to pharmacological standards and testing of all medicines.
Clutter, thank you for this information. I just see a GP Dr.
Tomorrow, I should start to look for an endocronoligst.
My dr. is young, only 33, and I have a strong feeling that she is against the more natural medicines. I will be researching the medicines you talked about and hope I may be able to benefit from one of those. If and when I can get a prescription.
Jennifer, the only 'natural' thing about NDT is it is derived from dried/dessicated pig thyroid. The other excipients and production methods are the same as synthetic T4 and T3.
I'm not saying NDT is better than synthetic T4+T3, I wouldn't know because I haven't tried it, and not everyone does better on NDT.
The addition of T3 to T4 enabled me to tolerate T4 and improved my low FT3 as I wasn't converting well.
Until your prescription is changed try increasing dose very slowly, say 25+50+25+50+50+25+50 until you can tolerate 50mcg daily and then 50/75 etc.
Clutter, at this moment I an alternating my dose by 25-50-25-50 and so on. Its been one week like this and I am feeling much better since stopping the 75 dose.
I have been doing so much research and reading tons of patients reviews. Most say they have had a great deal of relief when switching to NDT. And a small percentage did not handle it too well and went back to Levo.
I have been searching for an Endo within my area and am making a call tomorrow to setup and appt.
Many people on here have told me about certain testing which I will ask her about and see if she is willing to do. As my GP only wanted to do TSH, FT3 &4.
Ranges? You won't be able to convert T4 to T3 unless your folate, ferritin and B12 (and zinc and selenium) are optimal. That can make you feel worse when on T4.
TSH suggests under medicated hypo. Anxiety is a symptom of hypo.
When you say ranges, are you talking about my TSH or, vitamins?
With all that I have read on these replies I am going to call an Endo tomrrow to see if I can get an appt soon. I will ask he to test me for what you have mentioned and go from there.
Also, I have only read that being Hyperthroid caused anxiety. And have also read that many people on Levo have encountered anxiety/panic all the while their medicine being dosed to upper levels. And the anxiety never went away..
Ranges: was meaning thyroid test results, but really you need them for any blood tests.
Anxiety is a symptom of under treated hypo although hyper people get it too. You'll find that many people here found that anxiety went away when their meds were optimal. T3 often helps.
I had my thyroid removed in Feb, and since then I have anxiety which is improving a little, brain fog, fear, hair thinning, muscle and joint pain, bruising, bad period pain, lack of concentration at times, forgetfulness, headaches, migraines are worse 3 attacks last time with aura on same day, breathing and swallowing issues at times,spasms in my jaw and the pain at either side of my head, ringing in ears at times.
I was told that because I was hyperthyroid for 5 years my body has come crashing down to earth with a bang since my thyroid removal and it will take many months for my body to get back to normal. Levels are coming down since removal. Jst have to wait until then and really see for sure.
I also had RAI last year and I was very sick afterwards was in hospital for 5 days so I think that hasn't helped things either. My body has been through so much! I jst hope it won't take much longer to feel ME again!
ButterflyActive, my heart goes out to you! To hear all that you have/are experiencing is heartwrenching and I hope that things will level out for you sooner than later. This thyroid hell is such a waiting game. I wish it was as simple as - have a headache, take asprin, headache gone. If only we could be so lucky to feel our best with these minimal options of treating thyroid issiues. I haven't exercised in a really long time and have joined a gym and been pushing myself to go 3x a week no matter how tired I feel. I searching the in internet for a beginners fullbody weight routine. It's been 3 months and I can say I feel a difference in my mood, and fatigue levels have lifted a bit. Also dropped 10 pounds. Its a start. I also read the other day that being hypo one of the best things we can do is exercise. And I find it true. It wasnt easy. The first month was a bit difficult, the second month worse as I started to add more weights to the routine, but the third month was a the easiest and felt my strenght improved quite a bit. So now I will use exercise as and added medicine. With the only side effects of feeling better as time passes by. Hugs!
Subclinical just means TSH Under 10 and no symptoms. You have symptoms, so you are not subclinical. Your TSH is going up and down, despite treatement, so that probably means you have antibodies. And your doctor knows nothing about thyroid. Except that you are going to need thyroid hormone replacement for the rest of your life because your thyroid is failing for some reason - probably because you have antibodies. It's not just going to get better by itself, and you can't live a decent life with low thyroid hormones - that will leave you susceptible to developing all sorts of life-threating diseases, such as heart disease, etc.
If you know you have antibodies, you can do something about limiting the attacks on your gland. Such as keeping your TSH suppressed. And going gluten/dairy/sugar-free - and never any soy, of course - which helps a lot of people.
But it's not just about hormones. Being hypo will probably have lowered your stomach acid - it often does - which probably means you will be deficient in certain nutrients. You need to get as many tested as possible. Others have already mentioned B12 and ferritin, etc, but how about zinc, selenium, copper... Your doctor will probably be reluctant to test because they try to keep costs down, but you could always have private tests.
Clutter suggested you might be taking a B12 supplement, because of your high result. If so, are you also taking a B complex to keep things balanced? These things work in groups. But one thing you could try to reduce some of your symptoms, is to take some magnesium. Most people are low in magnesium because the soil our food is grown in is depleted. Take a little and see if it helps with anything. And when you've had other stuff tested, we can talk more about suppléments that will help you.
I have been taking the B12 Cyanocobalamin injection for the past few years, but have never taken a B complex.
I have tried 2 different kinds of magnesium supplements. One was call Natural Calm ( a powder drink) and the other was a pill form. Both of these caused dizziness and panic symptoms so I stopped taking them.
I am going to call an Endo tomorrow to make an appt as right now I just see a GP. With all the testing information that everyone has provided I will bring this with me and ask her to test if possible.
If you're having problems taking magnesium, it could be because your vit D is too low. And it might be a good idea to try taking zinc with it because the three all work together.
You should take the B complex, but if possible, get one with methylcobalamin and methylfolate rather than Cyanocobalamin and folic acid, because they're better absorbed. Doctors always go for the cheapest version of everthing, and that's not always what's best for the patient.
Greygoose, I have an appt this Thursday with an Endo. I will ask her to test my levels and see where I am at. And thank you for the VitB info, I appreciate the insight and will try.
A good book is 'Your Thyroid Problems solved' by Sandra Cobot MD and Margaret Jasinska ND. Sandra's website liverdoctor.com has good articles and she sells supplements. I have been using her Thyroid cream and supplements. My TSH dropped from 5.06 to 2.06 in 3 months. Hope this helps
Hello owejul. Thank you for this information. I will view over the book you've mentioned. At the moment I am waiting for some test results and will be going by what the outcome of them is and then going forward with either new medicine or trying supplmentation. Thanks again!
I saw my new endo dr today. We talked for almost an hour. She was very attentive and listened to all my concerns about levothryoxine. She mentioned that I could switch to a name brand medicine but told her of my personal thoughts of wanting to taper off of the medicine and see what a natural whole diet and vitamin regimen could do. Before you get upset with my thoughts, the endo did mention that we shoud check for antibodies. She said if nothing was found she would be willing to let me taper and monitor any changes. If antibodies are found, well, I will still tape off of levothroxine and give my body a chance to be rid of it and will then ask for Nature-throid which I read is hypoallergenic. I am scared of these synthetic medicines. If you have tried this medicine could you please let me know how it works for you? Thank you..
Also, I asked her about Selemium, VitD, Iodine and others vitamin deficiencies that may contribute to an underactive thyroid and she mentioned that they have nothing to do with the thyroid condition. But she said I should be taking 1000 to 2000 of Vit D daily so I bought some more VitD3 1000 to take with my daily multi-vit which has 100% VitD. I also bought a bottle of Super B-Complex vitamins in hopes that it will relieve some the stress from my worry thoughts about this levothryoxine medicine that has been making me feel not so right since starting it.
Below are the blood tests she did recommend for today.
Hi Jennifer 2314. I have taken Levothyroxine since 2008, and never been totally free of hypo symptoms. I seem to have followed the same dreary path of so many other sufferers on here,of our GP being guided only by the TSH numbers,with the consequence of when I reached a TSH level of 0.35,I had a panicky telephone call from the surgery telling me I had to reduce my Levo to 25: 50 on alternate days. Here I am one and a half years later,7 kg heavier,skin problems brain fog etc etc. Levothyroxine is toxic in my opinion and experience,especially as all the brands are different now,and I am allergic to the binders and fillers,causing itching and other skin problems,digestive upsets etc etc.
Therefore,I decided to reclaim my health after joining this excellent site. I went to my GP and asked her to do an array of bloods and then asked on here for recommendations of an Endo who thinks outside the box. I saw her yesterday,expecting a battle about changing drugs. Instead she could not have been nicer nor kinder,immediately suggesting I try WP Thyroid,which has no additives.I will start this next week........I have everything crossed! Will keep you posted.Good luck.
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Subclinical Hypothyroidism 
Subclinical hypothyroidism 
Subclinical hypothyroidism
Subclinical hypothyroidism
Subclinical hypothyroidism 
