Hashimotos? Pulse rate? NDT? : Hi everyone! I... - Thyroid UK

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Hashimotos? Pulse rate? NDT?

Cayenne44
Cayenne44

Hi everyone! I've been reading a lot on this site over the past few months and it's been extremely helpful and was wondering if everyone could help me with a few questions. I know you (mostly) ladies like full stories and full ranges, so here's mine.

I'm a 38 yr old female in the states, NYC. I hadn't been feeling well for about a year. Extremely tired, dizzy, gaining weight, memory fog, cold, etc. I went into a walk-in clinic at night in Nov. 2017 and got my thyroid (among other things tested) and these were the results:

TSH 2.45 .36-4.42

T3, Total 100 60-181

T4, Free .98 .80-1.8

At the time, I didn't know about optimal ranges so I figured I didn't have a thyroid problem. I then went for my yearly gynecologist exam on 2/21/18 at night and asked her to test my thyroid while I was there again. Here are the results:

TSH 2.880 .27-4.2

T4, Free .84 .93-1.70abnormal

T3, Free 2.9 2.00-4.40

My T4 came back abnormal, but my gynecologist said that I probably didn't need to go to an endo because it was slightly abnormal. Meanwhile, I still felt horrible and was getting worse and gaining weight. I picked an endo near me without knowing that some endos are diabetes specialists who don't know much about thyroid problems. I went to her on 3/23/18 in the afternoon and these are the results.

TSH 1.97 0.4-4.5

T4, Free 0.9 0.8-1.8

Thyroid Peroxidase Ab <1 <9

Thyroglobulin Antibodies <1 < or = 1

This endo said there was nothing wrong with me, and because I didn't have antibodies, I likely didn't have a thyroid problem (which is flat out wrong). At this point, I started researching what was going on with me and found this site and stop the thyroid madness. I looked into going to another endo, this time a friend's thyroid specialist. I went to him on 4/9/18. He thought I might have secondary hypothyroidism and also tested my cortisol. These are the results from an 8 AM testing:

TSH 3.45 .4-4.5

T4, Free 1 0.8-1.8

T3, Free 3.6 2.3-4.2

Cortisol, Total 17.1 4.0-22 in AM

ACTH, Plasma 23 6-50 pg/ml

Based on these results, he said he wouldn't treat me, but that another endo would likely treat me. Apparently there are some US doctors that follow the strict ranges, and some that follow the optimum ranges, that a TSH of 2+ likely is hypothyroidism. At this point, I was pretty distraught over how endos don't prescribe unless a TSH is over 5 (but I know UK people have it worse!). I did more research on STTM and finally went to a doctor who writes on STTM (I live in NYC, plus my insurance covered him. I'm extremely lucky.). He looked at my prior results and said that I 100% had a thyroid problem and started me on 1 grain of NDT (Armour) immediately. He also tested everything and these are those results from 4/25/18 mid-day:

TSH 1.53 0.4-4.5

T4, Free 0.9 0.8-1.8

T4, Total 4.0 4.5-12abnormal

T3, Total 86 76-181

T3, Free 3.0 2.3-4.2

T3, Reverse 9 8-25

Vit B12 631 200-1100

Thyroid Peroxidase Ab 1 <9

Thyroglobulin Antibodies <1 < or = 1

Vit D, 25-OH, Total, IA 54 30-100

He also did an ultrasound with the above bloodwork and the first thing the ultrasound technician said was, "How much NDT are you on because you need an increase, you have a lot of nodules." I ended up having 6 nodules, the largest was .6 mm. So he put me on one grain, and told me to come back in two weeks for more bloodwork. I went back on 5/9 and I still felt pretty bad, probably even a little bit worse. The dizziness was the worst- I would stay at work until 7 PM just so I could get a seat on the subway after rush hour. He raised me to 2 grains of Armour and took the following bloodwork in the morning (fasting, no NDT prior). He told me to come back in 3 weeks.

TSH .31 0.4-4.5abnormal but should be b/c suppressed

T4, Total 3.5 4.5-12abnormal

T3, Total 74 76-181abnormal

Thyroid Peroxidase Ab <1 <9

Thyroglobulin Antibodies <1 < or = 1

Vit D, 25-OH, TOTAL, IA 66 30-100

Vit B12 483 200-1100

Iron, Total 80 40-190

Iron Binding Capacity 296 250-450

% Saturation 27 11-50%

Ferritin 70 10-154

I went back 3 weeks later, on 5/30/18 and still didn't feel that great on 2 grains of NDT, so he raised me to 3 grains and did no bloodwork. He also gave me 1,000 cc's of vit B-12 shots to take every 2 weeks. This doctor is great, I'm extremely lucky to find him, he tests for everything and works with me. He told me to come back in 3 more weeks and we'd do bloodwork then. I went back on 6/21/18 and felt pretty good. I wasn't tired all the time, no longer freezing, my memory was slowly coming back, etc. We didn't raise my NDT but he did more bloodwork and said we would talk when we got the bloodwork back. Here's the 6/21/18 bloodwork (morning, fasting, no NDT):

TSH .0015 0.35-3.0

T3, Total 120.88 82-190

T4, Total 5.70 4.87-11.72

Vit B12 1062 >500

The doctor and I spoke and he said that my T3 was adequate. I asked him if I could go to 4 grains, because the T3 wasn't in the top 3/4 of the range and I wasn't losing weight (I had gained 20 pounds over the last year) and perhaps I would feel even better on 4 grains. He said it was fine to go to 4 grains and to come back in 3 months for more bloodwork. He also said that if I started to feel hyper to decrease by a grain immediately.

So I'm 5 weeks in on 4 grains of NDT and I feel really great. I'm extremely alert, not tired and not gaining weight anymore although not losing any either. Thanks for reading this extremely long post but I thought I'd try to cover any questions preemptively that you may ask about vitamins, cortisol, AM testing, etc. These are my questions:

1. Does the presence of nodules on my thyroid show that I definitely have Hashimotos or just thyroid problems? I don't have antibodies, but am I in that 10-20% that doesn't?

2. Is a TSH fluctuation of +2 considered normal (i.e. 1.5-3.5)? Does this mean I have hashimotos?

3. In the morning when I wake up, I check my pulse (I have a sleep app that does it). It is usually between 90-100 bpm in the morning, and pretty much around that through most of the day. Is that normal or does that mean I am on too much NDT? Since I've increased to 4 grains, I've gotten 1-2 heart palpitations a week, but that hasn't happened in a week or so. I've been on 4 grains for 5 weeks, so is it possible that was just my body getting used to the 4 grains?

4. Is 4 grains a high dose? I feel like most posts with people on NDT usually stop at 3 grains.

5. When can I start exercising? A lot of posts state that you should wait until you're optimal before you start exercising. I'm pretty lazy, but I just tried to go for a jog in the park and my heart felt like it was beating fast. I came home and I tested my bpm 30 minutes after exercise and it was 120 bpm.

6. When does weight loss typically start happening after optimal dosing?

Thanks everyone for reading this really long post and thanks for writing your own posts! This forum has helped me so much over the past few months.

5 Replies
oldestnewest

The range of TSH you showed are the result of different times of day blood was drawn, TSH being highest overnight, and declining throughout the day: you had early morning and afternoon, and night tests, plus also the TSH should go down as thyroid 'meds' go up. So a range of 2plus is not odd, and doesn't mean you have Hashimoto's. The best test for Hashimoto's are the two thyroid autoimmune antibodies tests ( TPO and TgAb)- as yet yours don't appear positive. I take levothyroxin T4 and T3: on introduction of T3 I got high pulse rate of 100-106 occasionally and raised Bp, along with palpitations, but by week three as the T3 rose to 25 mcg, with 75 mcg T4, these all came down overnight to 70s/80s rate, and normal Bp, and no palpitations.

I am rather confused by the US units/ ranges. But it doesn't appear that your results are quite comparable some are 'total' T4 or T3, others are Free T4 or T3 , one has both. Once you start taking a combo T4/T3 like NDT conventional ranges become rather meaningless as you are bypassing the usual TSH-T4-T3 cycle, in the Uk we rely on the FT3 figure being halfway way or over. Hopefully someone else will comment how total T3 fits in to this. Your endo has been quite quick to up doses as it is between 6-8 weeks for the thyroid system and effect of the T3 on the receptor cells to settle down. Not sure about your important Vit D, B12, folate and ferritin levels as no units with results, don't see a folate result. Ferritin ok, mid range but could be higher for menstruating woman.. cortisol should be at its highest as get out of bed/ morning. If you had to wait to do any exercise till you were optimal ...we'd be even more unfit etc than already.... go gently, and don't push yourself too much..walk rather than run. Your body will soon complain if you do too much!

Thanks, Judith! Maybe my pulse will go down like yours did after my body adjusts to the 4 grains. I'm not sure why some doctors here choose to use the total vs. free test ranges for T3 and T4 and I'm curious why my T4 totals were abnormal, but not my frees. All of the endos used different labs to send the bloodwork to and probably chose which tests to run, except my current endo who did everything at first, but his last lab was only for totals. I'm mainly vegetarian (eat seafood), but I am trying to eat more lentils and tuna to get my ferritin up.

Well, that's a lot of information! Well done!

I have to say that your endo makes me feel a little uneasy. For several reasons :

a) 1 whole grain is rather a lot to start on. We normally advise people to start on 1/4 grain and increase by 1/4 grain every two weeks. You have gone up to four grains very quickly, and that might be stressing your body. The body needs time to get used to the hormone, having probably been without it for quite some time, and adjusted to it. Now, it has to readjust to having hormone.

b) Tests are too soon and too frequent. It takes the body about six to 8 weeks to synthesize the T4 in NDT. As you started straight on to NDT, we don't know how well you convert. But, if you are a good converter, your FT3 is still rising.

c) He's not very good at testing. It's Free T4/T3 you need. The Total tests don't give you enough information - especially not to dose by.

So, your questions :

1) The presence of nodules doesn't automatically mean you have Hashi's. Most people have some nodules, even those without thyroid problems.

2) No, the fluctuation in your TSH does not mean you have Hashi's. TSH fluctuates throughout the day, being highest in the early morning, and dropping throughout the day. It also drops after eating. The TSH does fluctuate with Hashi's, but it doesn't move very fast. And, such a small fluctuation doesn't mean very much at all, I don't think.

3) I can't answer that question.

4) 4 grains is a highish dose - especially the way it was arrived at. I think you ought to get retested when you've been on it for possibly 8 weeks, give the conversion time to catch-up with itself. However, if you need 4 grains, you need 4 grains, and that's all there is to it. We're all different.

5) You can start exercising when you feel up to it. Optimal is not a number - blood tests are just a guide - it's how you feel. But, if exercising knocks you out for a couple of days after, then you weren't really ready for it.

6) I think I have to say weight-loss doesn't typically start happening at all. It's a very individual thing. Even when optimal in all other ways, some people have trouble losing weight. Others start losing as soon as they start thyroid hormone replacement. There's no one answer to that question. You'll just have to wait and see how it goes. :)

Cayenne44
Cayenne44
in reply to greygoose

Thank you for replying greygoose!

I totally understand your concern about the endo. I had read on here about the slow increases prior to going to him, but kind of decided that he must know what he's doing. I also didn't feel terribly bad after the increases, but I always had that in the back of my mind that it might be too fast. And you're right, the testing was done too soon and too frequent but I didn't object because I have great insurance (one of the few here in the US unfortunately) that pays for the testing. I'll go back in a couple weeks to get tested again, to get a more accurate result after 8 weeks on 4 grains. He put me on NDT straightaway instead of levo because he's a big believer in NDT. I went along with it because STTM seems to think it's better (but everyone is different I understand) and my endo wrote an article on STTM on subclinical hypothyroidism (which I probably am) and the benefits of NDT. He said that he likes using NDT because a number of people have problems converting. I can link the article if that's allowed. Honestly, it's just as hard in the states as the UK to find a decent endo who believes you when your TSH isn't crazy high but you have every symptom in the books.

I've just googled the difference between total T3 and free T3 and what you've said makes sense. I'm not sure why he would have done total instead of free as well. Perhaps because the free T3/T4 were tested prior? He used his in-house lab for the last test results, so he didn't have to send them out. Maybe that's why.

Thanks again, for all your answers!

greygoose
greygoose
in reply to Cayenne44

Well, I did very, very badly on NDT. It really doesn't suit everyone, despite what they say on STTM! A lot of people do have trouble converting, that's true. But that doesn't mean that they'll do well on NDT. T4+T3 might suit them better - or even T3 only.

I'm not sure it's a good idea to assume that a doctor knows what he's doing, because so often they don't.

Whatever his excuse, he cannot tell how good - or bad - your FT3 is by looking at your TT3.

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