Body pain and headaches

[magsyh]

For the past 7 weeks I have been driven crazy with headaches and this past week body aches especially my back. I upped my thyroxine from 62mcg to 75mcg 4 weeks ago and the pain has got worse. Is this because I'm on a small dose and it's now reached the point that it's making me feel worse instead of better?

On 62mcg my TSH was 2.4 (0.3 - 4.5)

T4 was 17.9 (10-22) T3 was 5.04(3.1-6.8)

On 68mcg back in February TSH was 1.9 (0.3-4.5) T4 was a shocking 13.9 (9-20) they refused to test T3

It's been 4 weeks on 75mcg I'm in a lot of pain should I up to 88mcg now? I get no help from my GP because I'm now self medicating so usually I'm too cautious when upping the levo. If I do it too quickly my heart rate goes a bit crazy and all I get from GP is told you so and reduce the dose back to 50mcg.

Vitamins etc all ok I had them checked by blue horizon in November.

[Nanaedake]

The bone pain may not be due to your dose of thyroid meds or thyroid levels. Are vit D, folate, ferritin and B12 optimal? Has your doctor checked other antibodies levels besides thyroid?

You will get help to investigate the bone pain if you explain your symptoms to a doctor and don't assume they are thyroid related. Let the doctor do the usual checks they would do for anyone who presented with chronic headaches and joint pain whether they had a thyroid condition or not.

[magsyh in reply to Nanaedake]

The pain is more like muscle pain and skin feels like it's burning and sore to touch. I woke up with my ribs really hurting so bad I couldn't wear my bra. I discovered that the pain came from sleeping in a top with seams. I seem to be hyper sensitive to pain and anything putting pressure on my skin. I had this problem for years before I was diagnosed hypo. It has never been this bad. It had improved but has got much worse since I upped the levothyroxine.

[Nanaedake in reply to magsyh]

You need to have it investigated but just because it seemed worse when you increased levothyroxine doesn't necessarily mean the underlying cause is anything to do with levothyroxine. There could be a variety of conditions that could cause it but I wouldn't know what they are.

Who diagnosed you as hypothyroid and what were your results when diagnosed? Your FT3 is quite high in range. For what reason are you self medicating?

[magsyh in reply to Nanaedake]

I was diagnosed by Dr Frey. At the time I had TSH 2.83 (0.3-4.5) T4 13 (10-22) T3 3 (3.1-6.8) I was also diagnosed as a child but couldn't swallow the tablets so nobody bothered. I am now self medicating and buying my own levo as the cost of NDT by private prescription was extortionate.

[Nanaedake in reply to magsyh]

What type of thyroid condition was diagnosed?

[magsyh in reply to Nanaedake]

I don't have hashimotos. He thought it may have been central hypo due to Lupron injections I received which shut down your hpta axis. It may be nutritional. My thyroid suddenly burst into life after CT scan with iodine contrast. I had good levels for over a year and then it crashed again. I mentioned all this to my GP but they say they don't know.

[Nanaedake in reply to magsyh]

Have you had a scan to check the pituitary gland?

It sounds like you have various conditions that are coexisting.

It make take a bit of untangling?

[magsyh in reply to Nanaedake]

No they were going to do a scan but changed their minds when the Lupron wore off. I had very bad headaches and very high blood pressure with the Lupron.

[Nanaedake in reply to magsyh]

Maybe you should discuss a scan to check pituitary function. Your thyroid results before you were taking levothyroxine look like Central hypothyroidism to 'non-expert' me but it might be something else. If that is proven CH you would then get treatment via your medical practitioner.

Perhaps you need to find an expert in Central hypothyroidism? If you're in the UK you could contact Thyroid UK via their website to ask about any known expert. You need to collect the evidence on your condition so that you get a confirmed diagnosis and can then get medical support.

Make sure you get and keep printouts of your original blood test results, keep a folder with copies of any future tests and build up the evidence.

[Batty1 in reply to magsyh]

I've been having issues with being touched it hurts like crazy and simply bumping into something causes me to whimper.

Anyone know what is causing this sensitivity ?

[magsyh in reply to Batty1]

This is how I am. Everything I have read says low thyroid.

[HashiFedUp]

Lower back pain is common with vitamin D deficiency. I’m no vit D now and Celebrex for joint pain and it works well.

[magsyh in reply to HashiFedUp]

My vitamin D level is 80 so I presume it's not that?

[vocalEK in reply to magsyh]

grassrootshealth.net/projec...

When taking Vitamin D, it is important to also take a small amount (around 90-100 mcg) of Vitamin K2-MK7. This helps the Vitamin D to route your dietary calcium to bones and teeth, and away from blood vessels and soft tissues. Also important to take adequate amount of magnesium.

Low magnesium levels also can cause muscle pain.

[magsyh in reply to vocalEK]

I take K2 and magnesium.

[Batty1]

I wonder about pains and thyroid meds .....pain has been a constant companion since losing my thyroid and going on thyroid meds, I'm currently chair bound again because I either have a stress fracture or plantarsfacitis.....never had these many pain issues until thyroid troubles.

[Gismo333]

It does sound as if you have an adrenal problem as you are unable to convert the T4 to T3, this has to happen as the T3 needs to get into the cells.

I would suggest an adrenal stress test from Genova UK, you go on their site and find a practitioner near you, they will order the test and read it for you. If it is low then Nutri do some good natural adrenal support.

With any thyroid supplementation adrenal testing is imperative. If your adrenals are low then you will never get your thyroid right.

Also you need T4 with T3, you can get this from private sites. You can direct message me.

Hope this helps

[magsyh in reply to Gismo333]

I have had my adrenals checked they follow the correct curve and only a little low in the morning. When I have enough T4 I convert well to T3. My TSH doesn't rise enough and I don't make enough T4 without thyroxine?

[SilverAvocado]

Hi Magsyh,

I clicked through from your older post. A lot of your experiences with your heart sound familiar to me. I've also had to be careful with dose changing as I get heart problems. Thyroid hormone is very related to the heart so this is not surprising.

I also find that almost any symptom can happen after a dose adjustment. I can feel overmedicated, undermedicated, a new symptom pop up, etc. It's only until after about week 4 that things start to settle down, and I have a blood test and adjust dose sometime after 6 weeks.

You're very right that a low dose can often do more harm than good, it's very common to feel worse before you get your dose up high enough and feel better. I suggest hanging in there for 6 weeks on a given dose unless symptoms are completely unbearable.

Usually you would adjust by 25mcg of Levo every 6 weeks. If you've found you are extremely sensitive to changes in dise you could cut that 25mcg in half and increase by 12.5 instead, or stay on the 12.5 increase for a week or two and then push it up to the full 25mcg increase. Make sure you wait 6 weeks on a stable dose before you have a blood test, though.

When dosing with Levo, the first rule of thumb is to slowly increase freeT4 towards the top of the range. Keep an eye on symptoms, as these are the most important thing, and if you feel much better stick on that dose.

It's okay to take freeT4 all the way to the top, and its quite common to need it slightly over the top to feel well. If you get there and symptoms haven't resolved then it's time to consider other options. The majority of people will do well on Levothyroxine only, the most important thing is to dose it correctly for you personally. It can also take some time to get to that point, everything with thyroid hormone is slow, it takes easily 6 months to get a dose tuned corrrectly.

[magsyh in reply to SilverAvocado]

Thank you for that. I have been on levo since November 2018. I've got as far as 88mcg and have always ended up dropping back to 50 coz I get so scared when my heart acts up. The docs are horrible to me and I usually get a real telling off so I'm scared as hell but fed up of being unwell

[SilverAvocado in reply to magsyh]

Have you considered trying NDT or T3 instead?

The blood tests you've shared show you're very undermedicated, with a freeT4 less than halfway up the range. You won't feel the benefit of the hormone you're taking until you can get the levels up considerably higher.

Another option is to slow your increasing down and see if you can manage to raise super slow. This can be effective if heart problems are caused by the adrenal glands.

Getting all your vitamins optimal is also important when taking thyroid hormone, and vitamin problems could be part of the reason you're struggling to raise.

I currently suspect my own heart symptoms (short episodes of high pulse) were caused by too much T4, and have been fiddling with the ratios with quite a bit of success, so it could be worth trying to add T3 and see if that suits you better. Some unusual people find they can't take any T4 at all, as it gives them unpleasant symptoms.

[magsyh in reply to SilverAvocado]

I tried 1/2 grain of NDT when I first started my heart races like mad so I was really scared and it cost an arm and leg so I started levo. I have discovered 62mcg I feel pretty good but levels not high enough. If I go up to 75 or 88 it makes me very hypo and my T4 drops so I presume I need to try 100 but don't have the courage. I did manage to get low dose propranolol from my doc supposed to be for my anxiety but I have never taken it because I know it will make my T4/T3 conversion worse.

[SilverAvocado in reply to magsyh]

Half a grain of NDT is the equivalent of roughly 35-40mcg of Levo, so it's quite a high amount to start with. For a person who hasn't ever struggled to raise starting on a quarter would be fine, but if you need to go super slow you could start with a smaller amount.

If the situation with your heart is just uncomfortable and not unbearable then you could try gritting your teeth for a couple of months to get to the point where you're ready to try a higher dose and see how you get on once you've raised it a bit higher.

But I think overall your only real option is to take the approach of getting all your ducks in a row and setting out to heal other parts of your health and hopefully when you can do so you'll be able to raise hormone. The first thing to tackle are vitamins, vit D, vit B12, folate and ferritin. All need to be optimal, which is usually over halfway through the range and some need to be at the top. There is good advice about this elsewhere on the forum.

Treating the adrenal glands also seems to fit because this is the biggest thing that can make it hard to introduce and raise thyroid hormone. This is the thing that is called by many names but most commonly adrenal fatigue. The first step to dealing with it is a 24 hour adrenal salivary test. This is talked about less often on the forum, but there are bits and pieces.

At the same time, raise thyroid hormone as much as you can. All these elements feed into each other, as you get hormone levels better it makes things easier for the adrenals, being hypo trashes vitamins, etc.