New Here & Just starting on Levothyroxine but...

[JGracey]

only 2 days in and finding myself feeling sort of worse :\

I'm not in the UK (Canada), but oddly, the only forums I've found so far are in the UK.

I was diagnosed a few weeks ago (family doctor) but it took 2 weeks to get an appointment to see her again. In those 2 weeks I did a bit of reading and there is a lot of confusing information. I read a lot of happy things like you'll start feeling better right away (I feel worse), treatment is just one little pill a day, easy peasy stuff ... but I'm finding out the truth can be otherwise.

My doctor explained a bit of it to me, and asked if I wasn't feeling tired or anything. She was surprised that during my physical I told her I felt pretty good. I'm on the treadmill everyday for an hour; after that, I do my weights. Sometimes I walk outdoors, or ride my bicycle. Not anally active, but I try to do an hour to an hour and 15 minutes a day. I also watch my calories (still gained about 7 lbs in a year and didn't know why).

She was surprised by that (the fact that I could exercise like that, and still manage a normal daily life), and I didn't understand why, but I guess I understand a little more now after reading here.

I don't know the numbers from my results, but I do remember seeing all the "Ts" checkmarked on the blood req below the "thyroid" section, along with a bunch of vitamins and other things. The only thing she mentioned was my B12 was high (I take 2500 mcg a day because I do have a deficiency) at about 1000 and wanted me to stop taking it during the next 6 weeks and she'll check it again then. And that it was imperative to begin the treatment immediately.

My last physical (18 months ago) didn't show low thyroid function, so she is scheduling a couple of other tests but wants to wait til after more blood work in 6 weeks from starting. She prescribed what seems to be the starting dose (25mcg).

Since I'd read the information, I knew enough that I'd have to leave time between other things and food (so, 6am a bottle of water and "the pill", then nothing except more water if I feel like I need to drink something until about 8 when I have breakfast which is a 0% fat single-serving yogurt).

Yesterday was the first day ... I felt okay until early evening, though I did notice I didn't have much of an appetite and had to force myself to eat normally. Just after dinner I didn't feel well. It wasn't anything specific, and no more tired than usual but felt "poorly" as my grandmother would have said.

Today I still lack much of an appetite and have diarrhea (I almost never suffer that) and feel much more tired than I did 2 days ago. I couldn't even force myself to get on the treadmill or go outside today (and it's a beautiful day!)

I do have other meds (for high blood pressure - same ones for 20 years now, and eye drops for glaucoma, and have had psoriasis for 20 years, but have never taken anything internally) and supplements (COQ10, B12, Curcumin, Magnesium Citrate powder). I asked her about possible problems with what I take (she had my list on her desk) and she checked through them all and said they would be fine as long as I took them 4 hours or more after the Levothy.

<sigh> The thought of a year or longer before I feel better is enough to make you cry, really. To be honest, I didn't expect to experience side effects at all. I usually don't with other meds, though if I'm honest ... I'm never sick enough to have had other meds prescribed (beyond the above).

Having read other people's experiences here I feel better, but also worse. I could experience even worse things than I am since it's only day 2 for me, and that's frightening. On the other hand ... this might be as bad as it gets for me, so I suppose it's a waiting.

I'm really glad to have found this place. It seems the patients are the ones who can teach you the most about dealing with the symptoms

[Marz]

Would be good to see your actual results with ranges so people could comment. The TSH - FT4 - FT3 & ANTI -BODIES TPO & Tg.

Blood pressure is a symptom of something else going on - possibly thyroid - either too little or too much. Skin issues can be linked to auto-immunity and gut issues so important to rule out Hashimotos.

[JGracey in reply to Marz]

Hi Marz - thank you. I knew someone would ask, but I don't have the numbers. Next time I'll ask.

When my old family doctor realized I had high blood pressure (that was 19 years back), he sent me to have a bunch of hospital tests to rule out disease or other health issues before prescribing anything for me because at that time, except for the high bp, I looked and felt pretty healthy. There was nothing. If it's related to thyroid problems, then it's been around a long time for me.

It isn't uncommon that people have no health issues but have high blood pressure. It's called primary or essential high blood pressure. I've been on the meds for that for about 19 years now. It's well controlled, and was monitored monthly by my doctor. He had me come in every month and blood work was done every 3 months (because of the B12 deficiency - I had monthly B12 shots from him). He did a full set of tests yearly with my physical as well, always wanting to be sure something wasn't missed.

What do you mean by "too much skin"? I appear to be covered from head to toe the way most humans are although ... currently I do have some that's rather loose (lost over 100 pounds in the last 5 years, on purpose).

I have had psoriasis for longer than I've had high blood pressure. It is an autoimune disorder - the dermatologist my doctor sent me to did a host of tests as well (no idea what they all were for tho, it was a long time ago now). A couple of people on my mother's side of the family (2 of her sisters) had psoriasis, and one had skin Lupus (also an autoimune disorder). My understanding from a lot of reading is that it can be family related (first thing the dermatologist asked was whether anyone in my family had skin issues) ... my youngest daughter has it, and her son (my grandson) has it. No sure if or how that could be related.

My current doctor (just over 3 years as our family doctor retired 5 years ago - we had no doctor for 2 years) seems to be somewhat knowledgeable about thyroid issues. On my first visit to her (sort of a "get to know" initial visit), she asked if I had thyroid problems after looking at the history sheet I filled out. I said no, never had as far as I know. She did my physical, sent me for blood work (including thyroid) and a few hospital tests (part of a physical exam here) and all my tests came back normal.

She regularly tests for thryoid function it seems. I can't say how many times my previous family doctor tested, but he was very thorough, so I'd assume if not during the physical every year, then he probably tested every few years. The blood work request sheet was always filled top to bottom with everything check marked.

(Reading through other's posts on the board it seems some have doctor's that don't seem like doctor's I'd want.)

When I had this recent blood work done, the lab asked if I wanted to be able to get my results online, but I wouldn't have had a clue what they meant anyways, so I said no.

When I have my 6 weeks blood work done, I'll get them to set me up so I can view them online.

Honestly, this all seems a little bizarre to me. It's wonderful to have some others to talk to though, and to read about the different issues (at least if I do face them at some point, I have some clue now.)

Other than what seems to be symptons from the Levoxy ... I am fine. So far this morning (only 8:30am here) I feel okay - better than yesterday anyways. Still, it's early in the day, but I'm ready to get on the treadmill (feeling much less tired, and almost normal); and my stomach is grumbling for it's food - and that hasn't happened in the last 2 days.

(oh, sorry if I seem a little incredulous ... I almost never feel sick or unwell so now I'm wondering if I actually know what feeling well is really like, or was I fooling myself before, hahaha)

[Marz in reply to JGracey]

I didn't say too much skin. I said blood pressure can be linked to thyroid hormone - either too much or too little. 😊 - think you missed the full stop.

When you have your results - TSH - FT4 - FT3 - ANTI TPO & ANTI -TG - post them in a new post for people to comment. They may get missed if you pop them here. Have you been told you if you have Hashimotos ? As you have other AI conditions it is possible.

25mcg is a very small dose and can make you feel worse initially. I would go for a Full Fat yogurt at breakfast 😊😊 we need good fats.

I am suspecting your FT3 to be low - assuming it was tested .....

[JGracey in reply to Marz]

hahaha, sorry, missed the period between "too much" and "skin". Wondered about that.

I'll start a new thread when I get the next results, thanks. No, nobody ever mentioned Hashimotos and since it's only been less than a month since the thyroid issue reared it's ugly head I guess that isn't surprising.

There is only one yogurt in the entire world that I can eat ... it doesn't taste like yogurt at all. More like pudding or custard. Regular yogurt tastes like sour milk to me and makes me gag. Other suggestions for good fats?

My diet has been low-fat, low or no sugar products for years. I'm not diabetic, but would rather avoid processed sugars when I can (I bake with Stevia instead). I don't drink milk either - not intolerant, but if I have it, it's only in cereal or porridge which I rarely eat (even then, it's skim milk) and drink my coffee and tea black. When your biggest fear is gaining back all the weight it was so hard to lose in the first place, those kind of changes are for life.

I've been trying to figure out whether I do need to make changes in my diet, but I don't want to self-diagnose or change much until I see my doctor again. They frown on that in Canada.

Today's been a good day so far. Felt very "normal" physically, have a normal appetite back, don't feel particularly tired, spent the afternoon hiking it a wilderness area and still feeling pretty good.

I find it ... confusing (but I'm happy to be feeling good even if it's for a day).

[Marz in reply to JGracey]

Sadly Docs have a habit of forgetting to mention Hashimotos. I read often on this forum that when people eventually obtain their notes - they discover they have had Hashimotos for years. Docs do not understand auto-immunity and prefer to ignore it due to the complexities.

You need to check it has been tested and insist if it hasn't. There is so much we can do to help ourselves.

Without seeing your results and ranges you will not know how thorough your GP has been. This Forum has almost 58,000 members - and very few of their GP's have been thorough - just the basics. Also self-help is very popular on this forum - it seems the only way many of us get well.

Good fats for me are Olive oil - I live in an Olive Grove - so I make dressing everyday for salads and for my vegetables. When it is hot I roast the veggies early and we eat them cool with dressing - they are also cooked in olive oil. I also use Coconut oil when I need a crispy result as it reaches a higher temperature. Also grass-fed butter is good - cannot buy it here in Crete as there is very little grass

Will look out for your results Just remember too much exercise uses up the valuable T3 ....

drsircus.com/iodine/iodine-...

[JGracey in reply to Marz]

I'll definitely see what she says after the 6 week blood work. I went and read up on Hashimotos and I suspect she might have had that in mind, from my very first appointment with her. Nothing she specifically said, only some of the questions she asked me relate very closely to Hashimotos, though I had no thyroid issues at that time. She's asked several of the same questions when she prescribed the L.

I've printed off some sheets from the MayoClinic, ThyroidPharmacist, and Thyroid.org about Hashimotos. All are pretty close to each other. If she doesn't bring it up in my next appointment, I'll ask.

She may not have wanted to say anything unless she was sure. She did mention having an ultrasound for cycsts/nodes on the thyroid though.

[Good fats for me are Olive oil - I live in an Olive Grove - so I make dressing everyday for salads and for my vegetables. ]

Ah ... I use pure virgin olive oil in cooking, and in one of my salad dressings so that's helpful, thanks. And I use organic coconut oil too sometimes. Butter from grass fed cows we can get locally. I live in a town surrounded by farms that produce products for several dairies (one is local) and meat producers (butchers). I'm probably okay with those but they are things I use in small amounts. Hopefully it's enough.

[Just remember too much exercise uses up the valuable T3 ....]

I didn't know that until I read another thread here last night about exercise. Though I am pretty tired today, I suspect it's more than just using up T3. I was probably awake more than asleep last night. Bad (noisy) thunderstorm and a restless husband kept me waking up much too frequently. I usually sleep right through.

I might not sleep a lot of hours in a night, but it's usually restful. Last night wasn't. Not overly tired today, just the same tired I get when I don't sleep well.

Right now, it's just hard to tell. How do you know when it's normal tiredness, or related to a med?

I feel good except for the tiredness, I'm waffling about whether to have a nap or not. It's nice out and I hate sleeping a nice day away.

One bonus from the medication I already notice ... I'm no longer freezing all the time and my hands aren't like 2 blocks of ice. Not hot either, just what I'd call feeling the surrounding temps normally. Used to be it could be 80 outside, and I'd need a long sleeved t-shirt. Now if it's warm (75ish) I can manage with a regular t-shirt. If it's really hot (80s+) a sleeveless tank.

Can't say there's other noticeable physical improvements, but that one change at least helps me enjoy the summer weather (finally).

[Marz in reply to JGracey]

Sorry but your GP asking questions does not confirm Hashimotos - you need the tests I suggested earlier in this thresd ....

There is an informative website connected to this forum - thyroiduk.org.uk

Also there are over 2000 posts about Hashimotos under the heading TOPICS. If you are on a phone then scroll down and down. If you are on a PC then they are to the right of this thread. You can also type anything into the SEARCH box.

[JGracey in reply to Marz]

[Sorry but your GP asking questions does not confirm Hashimotos - you need the tests I suggested earlier in this thresd]

I didn't say it did. I said I suspect that is what she was thinking or considering.

I have no thoughts of doing anything or jumping to conclusions until I've spoken with her to see where I am at with the next results.

Slightly and pleasantly tired from a 5 mile walk (low intensity) along a nature trail. Another good day.