New here; hypothyroidism symptoms not improving with levothyroxine, what can I do?

[lostwoman]

Hello,

I was just diagnosed with hypothyroidism last December 6th, and have been on 50 mcg Synthroid (levothyroxine) since then. I am a 32-year-old woman living in Canada.

My symptoms have been: debilitating fatigue, brain fog/difficulties concentrating and thinking, excess sleep, apathy/loss of interest in previous interests, depression (that feels unlike any I've ever had), anxiety, hair loss, cold hands and feet, loss of day-to-day functioning (unable to work/study, perform regular tasks at home, etc), shortness of breath (especially after exertion), weight gain, increased appetite, and amenorrhea (my period, which had previously been quite regular, suddenly stopped for over two months prior to diagnosis).

Here are my thyroid hormone levels just at diagnosis (if the numbers seem strange, perhaps different units/ranges are used here in Canada):

TSH = 0.97 (range: 0.38-5.00 mIU/L), so on the lower side of normal

Free T4 = 10 (range: 12-22 pmol/L)

Free T3 = 3.0 (range: 3.4-5.9 pmol/L)

After over a month, my thyroid hormone levels have now apparently gotten better. But I was still too fatigued and brain foggy during my last appointment (last Monday) to ask my doctor for a copy of the report, so I have no idea to what extent they got better. She said we don't need to increase my dosage, because my levels are getting normalized. She has prescribed methylphenidate (a stimulant) to help with the fatigue, and it's early but so far it hasn't helped.

My period finally returned this week (albeit a very heavy one, with especially painful cramps), and my appetite is more normal, but everything else has been exactly the same. I still feel very, very sick with all the other symptoms. The worst are the crushing fatigue and apathy. I don't know if or how I'll ever return to work/study, given that I can barely get out of bed each day and spend most of the day unable to do much.

Because my TSH upon diagnosis was actually fairly low, and so was my estrogen (it has since become normal), my doctor has referred me for an MRI to check my pituitary as she suspects my hypothyroidism might not be a dysfunction of my thyroid (primary hypothyroidism) but rather secondary hypothyroidism due to possible pituitary dysfunction. But I won't have my MRI until April, meanwhile I continue feeling very sick and unable to function. I feel like my life is over (I am only existing, not really living), and I have had to contact a distress centre many times lately because I was overwhelmed with suicidal thoughts. I just feel like my quality of life is abysmal, and it's excruciating. I feel so physically and mentally unwell.

I don't know what is happening to me anymore. When I was diagnosed, I had the impression that things would improve with treatment; I was relieved to finally know what was wrong, and that it was something that there was treatment for. But why am I still feeling so horrible? I'm losing hope. Maybe I have something else? I feel so confused, scared, and deeply saddened.

I thought I would reach out, here, as I heard good things online about Thyroid UK. I'm sorry my post is so gloomy, but I would really appreciate any support/thoughts/guidance. Thank you so much.

-Brenda (lostwoman)

[Hidden]

Welcome to the forum, Brenda Most of the members here may be asleep as we're a predominantly UK forum, so likely some will reply to your post in a few hours. I'm sorry to hear you feel so dreadful - I agree, the crushing fatigue is the worst part. Your results show quite a low TSH along with under range T4 and T3. This indicates your hypo is likely secondary hypo with the pituitary at fault, so your doctor's right to send you for an MRI to check it out. Have you ever had a bad bump on the head or whiplash injury? That can cause problems with the pituitary later (there are other possible causes too).

Now, I am no expert on this, but I believe if you have secondary hypo as you do, then you may need some T3 as well as the standard Levo (T4) that you're being given, otherwise you're not going to feel well. That can be achieved by gradually adding in small amounts of T3 (liothyronine) or by starting you on NDT (natural dessicated thyroid) instead of T4/T3. However it's early days since your diagnosis, and I don't know what doctors are like in Canada, but getting T3 prescribed here in the UK is difficult, perhaps it is there, too.

Please let us know what your latest results are, however I suspect your FT3 and FT4 values have likely risen a little to put them in range, as you're taking Levo now, and therefore your doctor may be satisfied that everything is now in the 'normal' range. Normal and optimal are two very different things as pretty much everyone on this forum has found out.

Please don't lose hope, unfortunately thyroid illness is a long journey and often not an easy one back to health. You can regain your health but it will take time. Doctors these days usually go by the figures on their computer screen rather than how the patient feels, which is totally wrong in my opinion.

I hope someone else here with more experience can give better advice. I do wish you all the best.

[lostwoman in reply to Hidden]

Hi Jadzhia,

Thank you so much

I did have a whiplash injury in October 2016 when I was in a car accident; maybe this did impact my pituitary, although I really don't know because the strange thing about this heavy fatigue is that for a couple of months (last summer) it improved a bit. I still don't fully understand why it improved, but I got really sick again (and worse than ever) starting this past September and it's just gotten worse

Thank you so much for your empathy and encouragement...it's very hard not to lose hope, but hearing that it may be possible to regain health in time is helpful.

And I totally agree that doctors really need to pay attention to how a patient feels, above all!

[greygoose]

Hi Brenda, welcome to the forum.

So, those were your results on diagnosis? That is obviously not primary hypo, but could be secondary or tertiary (pituitary or hypothalamus). Either way, the treatment is the same. Start with 50 mcg levo, retest after six weeks and increase by 25 mcg, and repeat process until symptoms are gone. Your doctor is not playing the game according to the rules! Starting out with such low levels of FT4/3, it is highly unlikely that 50 mcg is going to be enough. You need your Frees to be at least over mid-range. Just being in-range is not good enough.

It's good she's doing an MRI, but the problem with Secondary hypo, if that's what it is, is that the pituitary doesn't just make TSH. It makes several other hormones. And, if your pituitary isn't functioning correctly for some reason, those other hormones will be low, too. So, they need to be tested, too.

It's doubtful that this condition came on over-night, so you could have been suffering from low T3 for some time. In which case, you could very well have low nutrients, which will be adding to your symptoms. Therefore, you should ask your doctor to test your vit D, vit B12, folate and ferritin. These all need to be optimal for your body to be able to use the hormone you're taking.

[lostwoman in reply to greygoose]

Hi greygoose (love your avatar; geese are awesome!),

Thank you kindly for your message

Yes, it does seem like my hypothyroidism is central and not primary. She believes that is the case. She did check my other pituitary hormones, as far as I know, such as ACTH, and apparently these were "normal". That actually leaves me even more confused...

As for the vitamin/mineral deficiencies, I have never been tested for vit D or folate. I will ask my doctor about these tests. My B12 and ferritin were historically low, but improved after B12 injections last year, and iron infusions a few months ago (they are now at a normal level of 290 (sufficiency), and 81 (range 12-109) respectively).

Thank you again.

[greygoose in reply to lostwoman]

Thank you. I love geese, too!

It is possible to have TSH specific hypopituitarism. You can tell that, of course, by your low Frees and low TSH. it doesn't make you any less hypo, of course.

Keep a close eye on your B12. It could easily go low again. Did she test you for pernicious anemia? If your B12 was low enough to warrant injections, I think testing for PA is imperative. And, if you have PA, you are not going to be able to store the B12. Already, it appears to have dropped too low again, with a result of 290 - assuming that is an ordinary blood test, and not an active test. As you didn't give ranges, I can't tell.

[Magill69]

Hi Lostwoman,

Have a look at the Thyrovanz Natural Thyroid - thyrovanz.com/ I think they are in New Jersey. Their bovine thyroid is from New Zealand. I email Cynthia in the Thyrovanz office. It is good to have someone to contact. Good Luck!

[helvella in reply to Magill69]

Their website says:

These terms and conditions are governed by and to be construed in accordance with the Canadian law. Any disputes shall be subject to the exclusive jurisdiction of Canada.

Which is odd as everything else about them seems to suggest they are located in the USA.

They also say:

<site> cannot guarantee delivery on international orders due to the varying customs laws of each country.

Which is not exactly encouraging.

[Magill69 in reply to helvella]

Hi Helvella,

Thyrovanz is definitely in the USA -

About Provanz Nutrition Ltd | Thyrovanz™

thyrovanz.com/about/

Dec 21, 2017 - Thyrovanz™ is produced by Provanz Nutrition Ltd, manufactured & shipped from USA. Thyrovanz™ is made from desiccated thyroid of New Zealand pasture fed cows.

I have received two dispatches in NZ, from a place in New Jersey (can't remember where). Their capsules are described as a Thyroid Supplement. I don't know anything about the Canadian customs laws. They seem very restrictive

[lostwoman in reply to Magill69]

Hi Magill69,

Thank you for letting me know about this, and I appreciate the good luck and echo it back to you (and all others on this site)!

[jimh111]

Your pituitary does seem to be producing too little TSH. Depression is known to produce less TSH and TSH with less bioactivity (less potent). Also, hypothyroidism can cause depression. So, you may have a healthy pituitary, it's likely but not certain the scan will find nothing. It would be better if you were referred to an endcrinologist to check out your overall pituitary function, just in case any other pituitary hormones are low. To be honest most endocrinologists are pretty useless, but you don't really have a choice if your pituitary output is to be measured.

I've seen a lot of evidence that TSH promotes T4 to T3 conversion. Without going into a lot of techical studies tissues such as the brain have TSH receptors and their funtion seems to be to control the local supply of T3. However, there hasn't been a study that gives conclusive proof. There is also evidence that liothyronine (L-T3) helps relieve depression, especially when antidepressants don't work. For these reasons I would suggest you ask your doctor to subsitute some of your levothyroxine for liothyronine. I think gradually working up to 20 mcg liothyronine (in two 10 mcg doses) would make quite a difference. Levothyroxine alone doesn't seem to work for patients with a low TSH and low fT3, low fT4 at diagnosis.

[lostwoman in reply to jimh111]

Hi jimh111,

Thank you very much for your helpful insights. I will definitely talk to my doctor about L-T3; very interesting that it helps with treatment-resistant depression (something I have definitely been struggling with lately).

Take care.

[Polymnia]

Hi I'm sorry that you have so much suffering but it looks like you have had some good advice. I would add that your diet is really important and could make all the difference to the way you feel. I would recommend that you research thyroid supporting diets. I take seaweed every day either in my food or as a suppliment. Also I have found either taking Curcumin+ suppliment or Ashwaganda as they are good anti-inflamatories and will help with the depression. There are many foods that can help with your symptoms.

[lostwoman in reply to Polymnia]

Hi Polymnia,

Thank you; I appreciate your kind words. I am definitely interested in exploring more about how foods and supplements might help.

[Hidden]

When I was first diagnosed, my levels were extremely low. I was started on 50 mg thyroxine and for a couple of weeks, it felt like i had been given a magic pill but then it all went back to how it had been prior to it... After months of my treatment being upped and then down, I was referred to a specialist and there it was found that I needed to be medicated to as high as possible for my T4. The range being used for me was that normal T4 would be between 12 and 22. Only once my T4 reached 18 did I actually start to feel better and was able to stay awake. In keeping my T4 high enough my T3 level isn't in the normal range but obviously right for me.

We all have our level prior to all going wrong, but unfortunately it isn't something that gets tested until you become ill. My specialist reckoned that my natural levels would have been very high and so my T4 should never be allowed to fall below 15. Your test results are showing that your T4 is still slightly low. Whilst you are in the lower end, push for a higher dose. There is a body of medical opinion that says that the clinical symptoms and not just the blood test results should be taken into account.

Ask if you can have your medication increased to see if that can help. You may be like me.

Also, it did take me a good 12 months after my medication was right to feel properly well again.

I hope you soon find yourself sorted out and on the mend

[lostwoman in reply to Hidden]

Hi jillp,

Thank you for sharing your experience and insights, and for your kind words. I am so glad that after 12 months you felt properly well...what a relief that must have been! I wish you continued improvement.

I can only hope I might experience some relief...even feeling a bit better than now would help, as I have really hit rock-bottom

[lostwoman]

Hi all,

Thank you so much for all your replies. I read them all, and appreciate each one. Sorry it took a while to respond to each individually...I've been feeling really sick since I posted this. Unfortunately, the methylphenidate made me nauseous and dizzy, so I need to stop it. It wasn't helping the fatigue, either.

I am wondering now if, in addition to hypothyroidism, I might have chronic fatigue syndrome (CFS). Maybe that could explain why I am not getting better on Synthroid, and the continuing extreme fatigue despite supposedly normalizing thyroid hormone levels. I do also have depression, but it was unresponsive to several medications (including antidepressants and an atypical antipsychotic used for treatment-resistant depression).

Or maybe it is hypothyroidism that is causing it all; I am very confused. If that's the case, why is that some people do see their symptoms fully resolve with Synthroid, while others don't? Is it possible it just may take longer for me (as it has for some)?

Can I just increase my Synthroid myself (to, say, 100 mcg, by taking 2 pills daily), or is this not advised? I will try to see my doctor as soon as possible to ask about this, but last time she did say the dosage didn't need to be increased...yet I still feel very unwell, and quite frankly disabled (have not been involved in "normal" routines of life - like going to school or work, doing household tasks, socializing, etc., for months now...and it's very emotionally painful to have such a poor quality of life :()

[jimh111]

CSF is just a collection of symptoms which are in most cases due to various forms of hypothyroidism. You could switch to 100 mcg by taking two tablets, provided you don't run out of them. As your fT4 is currently 10 it would end up at no more than 20 (probably a little less as your thyroid may still be contributing some hormone).

Your doctor is right to suspect central hypothyroidism although a scan is a bit premature but nonetheless useful. In cases of central hypothyroidism levothyroxine doses should be titrated according to fT4 levels not TSH. TSH is abnormally low in central hypothyroidism, so you can't use it to titrate treatment. Your doctor has made a mistake. Even so your signs and symptoms should carrry more weight than the blood test results.

I still think you will need some liothyronine (L-T3) but having a blood test after being on 100 mcg levothyroxine for about a month will give very useful information about how your pituitary (TSH) responds to more normal levels of hormone.